Overwhelmed...

I've been trying to figure out how to start this one. I've been meaning to write for a few days now, but just honestly haven't had the words. Sometimes there aren't any. I suppose this is one of those times. But I must do so, if for no other reason than to make a sad attempt at recognizing the glory of God and His faithfulness and goodness to me. I will start first with the news, because I've just found out some information that is such an answer to prayer.

Veronica, the "non-related donor" coordinator at Baylor called me yesterday and let me know where we are on the schedule. She said that they have contacted my potential donor and are meeting with them this week to discuss dates and times for the transplant. I now know that it is a male in his early 40's and that he lives in the United States. Whew-pretty incredible just to think about that. Some guy somewhere in the US is planning his donation process for someone he's never met. I wonder what they have told him about me. American guy in his early 30's probably is the only info he has. Who is this guy? Will I ever know? I sure hope so, not just to profoundly thank him for his donation and time and effort, but to see God's work in his life and meet this person who God has so richly blessed me with.

So, like I said, the coordinator people where he lives will contact him and let him know the possible dates that my coordinator/doctor has proposed. Those dates are January 25 starting the collection of stem cells from him. That would mean that I would go into the hospital on January 18. It's so nice to have some possible dates, even if they might change, just to be able to say, ok, this is real, it's actually happening. I've been ready for a couple of months, but the unknown is sometimes the worst part. So, depending on what he would like, they will discuss those dates and proceed. If he agrees to those dates, then they will proceed with his medical checkup and make sure he is still healthy and has no infections of any kind. If all of that checks out, then we will be ready to proceed with my side of things on Jan 18, which is when I would start my chemo treatment for 7 days leading up to what we call "day 1"-transplant day. Some more information that I found out is that I have two back up donors, in case this guy doesn't work out for whatever reason. My first backup is an American woman in her early 30's, and my 2nd backup is an American woman in her early 20's. These 3 people have all gone to get blood work taken to see about what kind of a match they were to me. All 3 people are perfect matches to me, which is so awesome. It also means that they have all 3 gone beyond just being on the national donor list, to get the bloodwork done, which hopefully means they wouldn't back out once they found out they were a match to someone, which is still always an option for them.

So, basically it's the waiting game this week. As soon as they meet with....hmmm....let's call him "Bob the transplant dude", they'll let me know if those dates work for him or not, if he's healthy and when we can set Jan 18 as THE DATE to start. That's one huge piece of news.

The other huge awesome news is that I found out from my insurance company that they are covering 100% of my transplant! What! Amazing right? Such a huge blessing from the Lord. CIGNA is who I use, and even though they have given us some trouble here and there, when it comes to inpatient hospital procedures, they are pretty much the best. This is a huge blessing, and I can now transition into my next overwhelming topic, the Benefit Concert. I was so so so blessed by the overwhelming support, love and prayer that God showed me thru y'all and others at the concert-which hopefully was more an evening of worship and praise than anything else. The fact that my insurance is covering the transplant, means that the support from that evening will be able to cover many other medical expenses, such as the dental work that had to be done before I could get the transplant, medical co-pays for the many doctor's visits the past year, being without work due to illness lately, as well as upcoming in my recovery period, bills and living expenses.

If you were at the concert, thank you from the bottom of my heart for coming. I cannot tell you how blessed I was to see all of your incredibly encouraging faces, and what a gift it was for me to sing and tell my story and us all worship the Lord together. If you were unable to make it, thank you for your support and prayer, as there were so many people who I wished were there, but even though you were missed, God lifted me up that evening with your prayers. Thank you a million times over.

I honestly had no idea how it was going to go. I had never done a concert before, and I didn't really know the "rules", but I hope those who were there felt this, but it seemed to me that the Lord was walking us thru the evening and even though there were some mistakes! (i.e. singing the first part of the first song with the microphone not on-just the Lord's way of keeping me humble!), I honestly felt it couldn't have gone better. I was so pleased and want to thank my family as well for their generostiy-not only in singing with me, but in helping me organize, publicize and create an experience, not just music. Thank you to my amazing friends Chad Kennedy, Phillip Odom, Mackenzie Wilson and Sarah Thornton for being a huge part of the evening and coming along side me in this process. What a blessing.

As you can see, I have so many reasons to feel overhwelmed. I know that being overhwhelmed in a good way will definately help when and if I become overwhelmed in a bad way coming up in the next few weeks. I can remember the people, the music, the support, and the prayers that God showed me on this evening and be amazed at His glory and splendor.

My schedule for now is to be in Abilene mostly until the transplant happens, at which point we will move to Dallas and I'll be admitted to the hospital. I will be going to Ft Worth to see friends a few times, as well as to Dallas for a doctor's appt next week, but will be based out of Abilene.

Thank you again (for reading this far!), and also for being a part of my life. God has truly show me grace-in His love, His provision and His goodness. Thanks for being Jesus in my life.

By His Grace alone,

Luke

No news IS good news!!!

Sorry about not updating, but yes, no news is good news. Basically, the last week has been many many dentist appointments getting me ready for the transplant. It was work that HAD to be done prior to it. This Thursday will be my last dental appt praise the Lord! and after that, they will fax a letter over to my hematologist's office and my transplant coordinator will submit all the workup tests I've done in the last week, as well as my dental letter that clears me for the transplant to my insurance company. It will take insurance 7-10 days to process all of that and approve the transplant, and then and ONLY then can they notify the donor as to when they would like to start the process. Yes, my donor has been notified (wherever they are...perhaps even Europe!), but not specifically told when it might happen. Once the insurance approves everything, they are notified and they are in charge of the schedule at that point. I'm thinking it'll be the first or 2nd week of january at this point, but obviously alot depends on the donor and their timing wants/needs.

I continue to be feeling really well which is such a blessing. It was so great to see so many of you recently in Abilene, at church and around town. I love being able to thank people in person and hope to do it much more soon. For those of you in the Abilene area, I am actually doing a benefit concert next Wednesday, Dec 23. God put this on my heart a couple of weeks ago, and I am so grateful for my family who is helping me with the concert, as well as who will be singing in it with me (some friends too!). I hope to say thank you to everyone who has been praying and also feel like I can do something for your support-even if it's only singing, it's what God has shown me that I have to give at this point. The details of the concert are...

Broadview Baptist Church auditorium
7pm, Wednesday, Dec 23.

Would love any and all of you who can make it to come.

Also, I did want to say something about the last couple of weeks in reference to my relationship with God. As I've said prior in several posts, I am so grateful to Him for people in my life and want Him to be glorified first and foremost. However, I've realized recently that I do have a sense of anger towards Him. I began processing this with a couple of friends and have realized that while I want to have a godly perspective on this whole journey, I wasn't being completely real with myself and my feelings. Now feelings I know can be something we can't always trust, but they are still important to acknowledge and I feel I hadn't been doing that.

I want to be honest in this blog, no matter what that means, and sometimes that can be hard. However, I believe this is part of my journey too. I am thankful that it happened now as opposed to after the transplant started, because I feel as though God is working in and thru me during this process of "working out my salvation." Alot of times we think that because we believe, that means that God is going to take everything away-our hurts, fears, frustrations, pain, etc. But that's simply not true. It's not been true for me for sure. And I think that our pride, at least my pride has gotten in the way of what God truly wants to accomplish in and thru me during this journey. However, my anger and pride have turned me back to Him-to figure it out, to process it and to try and understand why. Why is this happening Lord? What are you doing thru it? Why do I need to take this time out of my life for this process? Did I do something wrong?

All these questions are hard ones to be sure...questions that sometimes don't come with an answer. However, it's in the searching that we see Him. It's in the difficulties and trials that He has shown me we are "refined in the fire." Whew-that is NOT FUN! I don't like it. I'm realizing that lately. But one thing I do know for sure...God is good. He loves me and His Word is true. His promises He will never break and no matter what it feels like, He will never let us go. I'm striving daily to hold onto those promises and trust and believe. It's not been easy but it's a daily battle we fight. The search for truth, for understanding, for faith when there isn't much to be found. It's definately there. But more and more I'm starting to realize...the journey is the point...not the ending. The search is what it's about.

Pre or Post Christmas transplant???

That is probably the timing now. Either right before or right after Christmas. Right now, I have been doing bunches of tests that my insurance requires for the transplant. Also, I have to get some dental work done as well before hand. Doctors just wants to make sure that there is absolutely NO CHANCE that I will have an open infection or anything that would be possible to be infected when I have no immune system to fight anything off with. So it looks like the next couple of weeks I'll be getting a couple of crowns and a couple of fillings to satisfy the requirements for the dental work. Today was alot of testing. First, I had to collect my urine for 24 hours. The kicker was that I had to keep it on ice the whole time. Oh man-if people only knew that the little Igloo ice chest i have been carrying around w/ me the last day and 1/2 was a cooler for my pee-they probably wouldn't have come so close! haha. Today I turned that in, as well as having a 30 min breathing test, some more blood drawn for labs, and a cardiac test where they draw out some blood, mix it w/ a radioactive substance, put it back into your blood stream and take 3 10-minute pictures of my heart w/ a camera to make sure my heart and all the ventricles are functioning correctly. Good times for sure. I was so ready to be done w/ that!

Besides just waiting on everything and getting tests done, things have been pretty smooth lately. Pain is gone this week and it seems like the Sprycel medication has me in a stable place before the transplant takes place.

I have received so many encouraging messages lately...on facebook, emails and here on my blog. Thank you to all of you. I love reading your comments and prayers and encouraging messages. My prayer request for this whole experience is that 1. God would be glorified thru this, 2. that people who don't know Jesus would come to know Him thru the story He's writing thru me, and 3. that I would continue to draw closer and closer to Him thru this whole process.

To be honest, it's not been easy or as "blessed" as I'd like to pretend. God is good, this I know for sure...however, there have been some very dark days. But it's in those times that He reaches down, touches my soul and reminds me to "suffer well."

I recently found out 3 people who I know of that are facing incredible difficulties. A pastor in the Dallas/Fort Worth community, Matt Chandler who is the senior pastor at the Village Church in Lewisville recently found out he has a brain tumor and is getting it operated on this week I believe. Friends of his that I know speak of his constant faith and his hope that God would be glorified in it. That he would suffer well. Wow-what an inspiring story.

Another couple I know recently found out that the husband has cancer. These are very good friends of our families from a long time and I am so saddened for this news. However, I have found it is in sharing our struggles and our stories that we realize we have faith that we didn't even know we had. God gives it to us just when we thought we had none.

And one more is a couple that my parents are very good friends with. He had to have stints put in his heart recently. During this time, they also were able to help me out by recommending doctors to me in the metroplex, serving me and showing generosity when they weren't sure what was going on with his condition. Wow.

I'm so amazed at all these stories of faith, struggle and difficulty. Even though these stories are heavy on the heart, they are also so encouraging to see people suffer well and become more like Jesus in the process. After all, isn't that what its about!?

Ok, enough "preaching" for now. God's in control. I don't know much else in this life...but I do know that...that He is good, and has a plan and purpose for everyone.

By His grace alone,

Luke

The appetite is back...watch out food!

Haha. So yeah, now that my counts are more normal and I'm feeling better, my appetite has come back and it seems like I am hungry every 5 minutes! Today at my check in for the clinic to get fluids, I weighed 199!!! I think the last time I weighed that was in 8th grade. I am feelin so much better and it feels so great that food isn't causing me to be nauseous anymore.

Another piece of good news is that today was my last day in the clinic for a while. I won't have to go back to Baylor at all until next Tuesday! And even then, for an actual doctor's appt, not a clinic visit to receive fluids. It's so nice to be able to relax the next few days with the family over the holidays. Speaking of which, my family...not just immediate, but extended is all making the trip from Abilene to spend Thanksgiving with us here in DFW! Such a blessing. For me to get to stay here in case something happens, for me to get to rest and not have to travel, and still to get to see everyone is such a great Thanksgiving gift. Thank you all Stewart family for sacrificing and coming to the DFW area. I know it'll be a fun day at Chad and Holly's house (thanks Cholly for having all of us over!), and I'm so excited for everyone coming tomorrow.

As far as moving ahead, it looks like since I'm finally healthy and my counts are normal, we will begin the official transplant process. Beginning with next week I have to have a dentist's appt, check my kidney function, cardiac function and basically a bunch of random tests to satisfy my insurance's requirements to receive a transplant. They will also contact my donor to ask them when they'd like to begin the process. My donor will have to take a certain medication for 5 days to basically 'beef up' their white blood cells, and then once that is done, they will go to the doctor's office daily for a week to have checkups, labs, and get their system ready for stem cell extraction. Then once they're cleared, they will take the good white blood cells from them and ship them over here to Dallas, where I will be ready at that time to receive them.

The cool thing nowadays about bone marrow transplants is that its actually more of a stem cell transplant. No longer do they have to go thru their hip to extract actual marrow, but rather extract the cells thru their blood. From what I've heard, it's a much simpler process than it used to be, for donor and patient alike.

On my side, once the donor has decided on a date, we will make my calendar based on their dates. Once we get those dates set, the first thing I will go thru is 8 days of chemotherapy to basically knock out all my white blood cells. Once that is done, I will receive the healthy white blood cells from my donor. After that, my bone marrow will need time to reginerate and begin making healthy cells using the new ones I receive from the donor. This process takes about 2-4 weeks. During this time, I will be in the hospital, pretty much quarrantined off from any body or thing that could possibly cause me infection because I will have no white blood cells to fight anything off with. At the end of that process, once my white blood count is back to normal, they will allow me to go home, but still be coming daily to the clinic to receive fluids, check my labs, and make sure the transplant is taking to my body. Once things get better and aren't so critical, it will probably be more every other day, then once a week, then once a month. Depending on how my body reacts to everything, the whole process will probably take 2-4 months.

It's been pretty amazing and informative to be in the clinic all this week, seeing all the different patients who are dealing with different forms of cancer and at what process they are all in of about to have or already having had their transplant. Just like theatre, everyone has their own 'story' and its been so great to hear their stories and share mine with them as well. I truly believe it's only in being there this past week, even though it has been incredibly difficult, that God has been preparing me for this process and giving me the emotional strength that I need to be able to do it. Seeing people on the other side of the transplant who are doing well, even though they have their good days and bad days is so good.

The hard thing is seeing someone who is so chipper and feeling great one day to the next day feeling horrible, nauseated and barely moving as they come in the doorway. But yet we all move on. We keep going and keep comin back because we do have hope. Hope not only in the doctor's ability, not only the amazing medical discoveries that have been made, but also hope that God is doing something greater in all of our lives thru this process. And that is my hope. That no matter what happens, God would use this process in me, whether I know it or not, to glorify Himself. Whether its to see people come to hope in the Lord themself, whether its to encourage someone with the Greater hope we have in Jesus, or whether its for me to draw closer to God during all of this, I know there is a greater purpose, because He is greater.

I wish all of you a very Happy Thanksgiving and please know I am so thankful for all of your comments, prayers and thoughts. I'm thankful to be with my family this year for Thanksgiving. I'm thankful that I have a donor to help me feel better with new fresh white blood cells. And I'm thankful that no matter what, we have a God who is good, who loves us more than we can ask or imagine, and who has such a great purpose for our lives than we could ever imagine for ourselves.

Thankful and blessed,

Luke Longacre

Well, I couldn't sleep so thought I'd update a bit. Good news is yesterday, my wbc (white blood count) was 13,000!! My red blood count was a bit low still, but hopefully tomorrow it'll be back up to above normal. Also, I've had some chest congestion the last few days, which has been making it hard to rest and is just plain annoying. I'm not sure if that's related to any of this or just another thing going on. The dr. did chest x-rays last week and perhaps will again tomorrow. He said there is something on them, what he called 'infultrates', but he started me on an antibiotic in the IV, and so wasn't too worried about it. I was hoping it would go away pretty soon, but not yet. Oh well, chest congestion I can deal with....excruciating pain...not so much, and praise the Lord that's gone.

Another interesting thing about all this is that my appetitite has been weirdly suppressed. I'm just not hungry much at all. Not sure if I'm nauseated or what but this is definitly a first for me! I'm usually the one cleaning everyone's plates at the end of the meail, not giving away my food!

I'm really hoping to get to go to Abilene for Thanksgiving. Not sure if that will happen yet or not. Monday (or a few hours from now), we'll go to Baylor, get treatments, see what my bloodwork is and probably talk to Dr. Fay about the next steps...when I will start the official transplant work-up, if I can go home for Thursday, how long, etc.

Hopefully I'll be writing the next one of these from Abilene with family and food surrouding me! (although I may not be partaking of the food, but at least it'll be there!)

Until then,
in His Grace Alone,

Luke

On the road again....

Prayers are truly being answered. Counts are going towards normal, I'm feeling much better every day, and its seems like we're headed in the right direction. My white blood count was 21,000 today. Which is the lowest it's been since just getting out of the hospital in Abilene in July. Also, my red blood count was up to 26, so I didn't have to get a transfusion the last 2 days. The fluids are helping, and I'm also getting an antibiotic called Roseffin thru the IV still every day until my counts are back to normal and I'm feeling pretty good.

We have decided that it is best to pursue the transplant as soon as possible, which means starting the process before Christmas and depending on how long the official 'workup' takes, how long my donor takes to get his/her workup done, and if they are still healthy, the actual transplant could start before or after the new year.

My transplant coordinator wanted to make sure I was "emotionally prepared" for the transplant. I honestly believe that God has spent this week preparing me, and I feel I am ready to begin this process, "GET 'ER DONE", and start the healing process.

Thanks for your constant love, support and prayers.

Jesus is enough.

Luke Longacre

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