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

YouTube of people's stories with HES

http://www.youtube.com/watch?v=KG9erSOVfPo&feature=youtube_gdata

you might try copy/paste if the link doesn't show up as an autolink.

I really identify closest to the 26 year old guy in the way he talks about his pain, swelling and other symptoms. Obviously this disease can effect many different parts of the body but his story seems closest to mine. Perhaps it is cause of our similarities in age and gender.
In His Grace alone!!
Luke

A Name and info...

I finally heard my dr use a name I could look up and identify. Here's some info about my disorder more specifically...

Hypereosinophilic Syndrome (HES) is a group of disorders where very high numbers of eosinophils are found in peripheral blood counts (blood test) and organ tissue damage occurs. Unlike eosinophilic gastrointestinal disorders (EGID), which only affects the digestive tract, HES may affect any organ in the body. To diagnose HES, more than 1500 eosinophils/microliters must be found in the blood for more than six months with injury (damage) to organs. Chronic eosinophilic leukemia (CEL) means the eosinophils are clonal (all from the same cell line, identical).
Treatment of Hypereosinophilic Syndromes
Treatment of hypereosinophilic syndromes (HES) and chronic eosinophilic leukemia (CEL).
In the hypereosinophilic syndromes, high numbers of eosinophils are found in the blood and affect multiple organs in the body. This may include the stomach and intestines, the heart, lungs, skin and others. The eosinophils cause inflammation and eventually damage to the involved organs.

Treatment will vary based on type of disease, organs involved and disease severity.
1. Glucocorticoids (“Steroids”) Higher dose systemic (oral) steroids are often needed to control HES with organ involvement. Steroids are medications that fight (suppress) many types of inflammation. They are not specific for suppressing eosinophils, although eosinophils are particularly sensitive to them. Steroids can be taken intravenously (IV), or ingested orally. Systemic steroids, those that are absorbed into the bloodstream (oral or IV), are very effective for treating a number of eosinophilic disorders. Unfortunately, the disease may return when the steroids are stopped. Steroids given in this manner may have many harmful side effects when used for long periods of time. Serious side effects can include osteoporosis (brittle bones from bone loss), infections, adrenal insufficiency (body becomes unable to properly respond to illness or stress), avascular necrosis (collapse of the bones in a joint, usually the hip), and stunted growth. Common side effects may include fluid retention (swelling), increased appetite, “moon-face”, and irritability.

2. GleevecTM (Imatinib Mesylate) was developed to treat certain types of leukemia. Imatinib may induce remission in select types of HES. Not all patients with HES will respond to Imatinib. Genetic testing (for FIP1L1-PDGFRα gene rearrangement) can help determine if Gleevec is likely to help.
3. Calcineurin Inhibitors The calcineurin inhibitors include cyclosporine (Neoral®, Sandimmune®, Gengraf®) and tacrolimus (Prograf®). These are very potent medications that suppress the immune system by interfering with the function of T cells. They are used primarily to prevent organ rejection in people who have had organ transplants. They may also be of benefit in some patients with the hypereosinophilic syndrome. Because calcineurin inhibitors have a number of potentially harmful side effects, they are reserved for more severe and refractory (treatment-resistant) cases. Side effects include kidney failure, nerve damage, headaches, hair loss or excess growth, elevated cholesterol, high blood pressure, diabetes and development of cancer. Blood levels of these medications must be carefully monitored. Many other medications, particularly antibiotics, can affect the blood levels.

4. Anti-Neoplastic Agents Agents used to treat cancers are not specific for eosinophilic disorders, but may be helpful in some types of HES. These are potent medications with potentially harmful side effects and are reserved for more severe disease. Careful monitoring while taking these medications is very important.

Chemotherapeutic agents and approaches that have been used in HES include:
Methotrexate
Hydroxyurea
Cyclophosphamide
etoposide
Vincristine
Bone marrow transplant

Details of these potent medications are beyond the scope of this review. Further information can be found at www.cancereducation.com.


Tests to diagnose HES include a complete blood count and examination of other organs based on symptoms or other abnormal test results. Additional tests usually include a complete blood count and eosinophil count, blood samples for liver and kidney function, a blood test for Vitamin B12, erythrocyte sedimentation rate (general sign of inflammation), and a blood test for tryptase. Depending on symptoms and test results, other studies may be performed. For instance, ultrasound (echocardiography) is used to look at the function of the heart. A chest x-ray may be done to examine the lungs. As always, your medical team can best guide the necessary diagnostic tests on an individual basis.


Idiopathic Hypereosinophilic Syndrome
Criteria for diagnosis include:
1. Peripheral blood eosinophilia (high numbers of eosinophils in the blood) more than 1500 eosinophils/, for at least six months’ duration.
2. End-organ (heart, lungs, GI tract, brain, skin, etc) involvement with eosinophil tissue infiltration (invasion) and injury.
3. No other known causes for the eosinophilia (e.g. parasitic infections).

What are the prospects for people with HES?
Prospects for people with HES vary from person to person. It depends on how severe the disease is, which bodily organs are affected, and the success of treatment. In some cases, HES may be fatal.
 
Can HES be eliminated from the body?
HES cannot be eliminated, but it can often be treated.
 
How is HES treated?
Treatment of HES depends on which bodily organs are involved and how severe the disease is. The most common treatment for HES consists of high doses of steroids (medications in the cortisone family). Other treatments include medications that suppress the immune system, and anticancer therapies.
 

Pain is back, but wait, there's so much better news...

"As the deer pants for streams of water
so my soul pants for You oh God.
My soul thirsts for God, for the Living God.
When can I go and meet with God?
My tears have been my food
day and night
while men say to me all day long,
'Where is your God?'
These things I remember as I poor out my soul:
how I used to go with the multitude,
leading with the procession to the house of God,
with shouts of joy and thanksgiving
among the festive throng.

Why are you downcast O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise Him,
my Savior and my God.

My soul is downcast within me;
therefore I will remember you
from the land of the Jordan,
the heights of Hermon-from Mount Mizar.
Deep calls to deep
in the roar of your waterfalls;
all your waves and breakers
have swept over me.

By day the
Lord directs His love,
at night His song is with me-
a prayer to the God of my life.

I say to God my Rock,
'Why have you forgotten me?
Why must I go about mourning,
oppressed by the enemy?
My bones suffer mortal agony
as my foes taunt me
saying to me all day long,
'Where is your God?'

Why are you so downcast O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise Him,
my Savior and my God."

Psalm 42. A Psalm of David. May His Word penetrate our hearts and lead us to give Him all the praise, all the glory and all the honor.

Amen.

Feeling better...

So, whether it's the "tide-me over drug" called Hydrea, or the fact that my pain has just gone away, or perhaps it's all the awesome 'prayers of the Saints' out there (thank you!!!), my pain has diminished significantly!!! I haven't had to take any pain medication since yesterday morning, and even now, my pain level is about a 2 or 3, rather than 8 or 9. Such a blessing. I began taking the Hydrea med. 3 times a day yesterday, and I think by last night, it had kicked in. It is helping a lot, and its nice to be able to function without taking the drowsy pain medication.

Also, dealing with this new drug Sprycel hopefully will be a tad bit easier than getting the Gleevec medicine. I contacted Bristol-Myers who makes the Sprycel drug, and they actually don't have a "co-pay assistance program", but rather a patient assistance program. Which basically means that they don't help pay for any of it unless you 1. don't have health insurance or 2. your insurance denies you for that drug. Well, whether or not it's a "good thing", my insurance DID deny me. Ha-maybe the first time that I am actually glad that my insurance was being difficult! So, I have applied for assistance for Sprycel and hopefully will know in a few days if I receive help or not. Hopefully so, because just like Gleevec, Sprycel can be extremely expensive per month. Haha, I wish that I could trade the Gleevec pills I have left for cash! Perhaps sell them on the black market?! Hey, I'm a starving artist, don't judge me!! :)

Anyways, thank you all again for prayers, support and words of encouragement. Your words have really meant a lot to me, whether on text, facebook, comments on here, or to my parents. I pray God allows me to see all of you at some point in the near future and thank you in person. God is good, and has given me Joy in the midst of life's crazy circumstances. Thanks for reminding me of the many reasons I have to be JOYFUL!

In His Grace and Love,
Luke

Gleevec out, sprycel in...

Hey. So this is from my phone so won't be long, but needed to update now especially cause I'm feeling ok for the time being. This past weekend I had begun to feel bad again. Not horrible, but about a three on the pain scale. Then yesterday (Monday), it started getting really bad again. I called my dr and they said to come in and do bloodwork to see what my counts were. Then I went back this morning to talk to him about the results. My hurting always coincides with my white blood counts being elevated, so I wasn't surprised when it was 33,000. As well as my red blood cells being low and kidney function a bit elevated as well. I told dr I hadn't been feeling good and he said he didn't think the Gleevec was working and he was going to switch me to another similar medicene called Sprycel. We would see if that worked in the next weeks and if not, possibly push the transplant up sooner. I told him I am fine with pushing it up because I just want to start feeling better. Hopefully this new med will work. Anyways, so when I left his office today he told me he wanted me to get about a gallon of fluids before I left to hopefully make me feel better. So two hours later, I was on my way to teach class when all of a sudden my pain jumped to a 9. It was all I could do to drive home, take a hydrocodine and crawl into bed. I canceled the rest of my commitments for today and mom and dad decided they would come stay at least tonight to help out, and I didn't object. They're here now which is a huge blessing. Again, thanks for your prayers and hopefully this new medication will be the one. If not, looks like we might do transplant earlier, but we will see.

My pastors sermon Sunday was on having joy in all circumstances. Whew-God knew I needed to hear that!!

Love and Grace,
Luke

Feelin' Good...

Went to see the dr. yesterday. Good news! My white blood count is down to 24,000. Previously before this at my last appt it had been 37,000, so this was great news. I have also been feeling really good lately which has been a huge blessing. So my dr. said that it is pretty clear that the Gleevec medicene is helping which is great. However, he did discuss with me the possibility of doing a transplant sometime next year, perhaps in the summer. We will keep watching my counts, and I will keep going back to him monthly right now to monitor everything and make sure it doesn't get worse. But he said that because I'm young/healthy, he thinks it's wise for me to get the transplant soon, because #1, it would cure me, and #2, if I didn't get it, and just took Gleevec or another med for the rest of my life, (which would be imperative), there is a risk that it could develop into Acute Leukimia or something more serious than right now. Obviously there are risk factors doing the transplant, but he thinks because of my age it's better to go ahead with it. So, nothing is really set in stone at this point, but it looks like I might be doing the transplant next summer. What would this entail? Well, I would have to carve out about 3 months of my schedule to do it. I'd have to get chemotherapy for 6-8 days, then be in the hospital for almost 3 weeks, receive the new bone marrow, and then for about 2 months come back and forth to the hospital for checkups and monitoring. The highest risk factor of the transplant if after they wipe out the white blood cells, because I wouldn't have anything to fight off any type of infection with.

Thank you all for your continued prayers and support. Your prayers are felt every day. I hope to see all of you at some point over the holiday season and thank you in person!

By His Grace Alone,
Luke

mmmmmmmmmmmkay...

Hey! It's been a while, but that usually is a good thing, b/c not much has happened. I wrote last time about some intermitent pain. The last couple of weeks, the pain levels have varied from 3-7 or so. I have taken the pain medication they gave me a couple of times, although I don't enjoy taking it because it knocks me out, but try to take just advil if I can stand it. My doctor had upped my dosage of Gleevec last dr visit to 400 mg a day, wanting to see what effect that had on me. Well, because I had been on 100 mg a day, I ran out of the pills in a few days, with no refills because I was still getting everything worked out with the Novardis company who is paying (thankfully!) for my Gleevec prescriptions for the next year. So there was a period of about 3 days I wasn't getting any medications. I saw the doctor yesterday after having some more intense bone pain, especially around my ribs, and my white blood count was up again to 37,000. Obviously, not going in the direction we would like because two weeks before it was at 21,000. Also, my red blood cells were really low. Doc said this would definitley cause me to feel bad as well as exhausted, both of which I have been. And although I was not glad about feeling that way, at least I had an explanation for the feelings. So, doc said it could have been those 3 days off the meds that were the result of the pain/higher counts. He is keeping me at 400 mg for now and seeing how that effects me.

Also, in good news, they found a donor for me!!! Sometimes this process can take months but praise the Lord they have found a perfect match for all my tissue HLA typings. That is good in case the Gleevec ends up not working or isn't doing the job as fast as doc would like.

Thank you for all your continued support. God bless all of you and please let me know how I can pray for you.

Luke

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

"Gettin' out of Town...!"

So good news! Its amazing what things can happen when doctors are involved. So my hematologist/oncologist, Dr. Fay here at Baylor Medical Center comes in the room about an hour ago and says "let's get you the hell outta here!". Ha-you have to know him and his sense of humor, but I was like "yes!". So he said that he is going to get the pharmacy to get me some Gleevec, which is the medication I was supposed to be on last week but was having a problem getting it cause of insurance. So he will get that for me today, and will get me out of here today as well. So looks like I'm going to be released from the hospital today! Praise the Lord. So if anybody was thinking of coming up here this afternoon or evening, I probably won't be here, so call or text me before you come. Thank you for all your prayers! God is so good. Hopefully once I get started on the Gleevec pill, that will help this pain go away and my white blood cells will start going into remission. Again, thank you all for your comments, words of encouragment and prayers.

Will update more soon,
Luke

"Here we go again..."

So, as my last post says, I had been experiencing some pains over the last 48 hours. Last night they got unbearable, and I stopped by some awesome church brother's apt and asked them to take me to the emergency room. I remembered Dr. Fay telling me that if I felt like I could make it to Baylor Medical in Dallas, that it'd be best to go to the emergency room there, so I'd already be in the system where he is (my oncologist/hematologist). So, my friends helped get me there, get seen by the doctor, and found out my white blood cell count was up again to 44,000. The last 2 weeks or so, it's been hovering around 33,000, which is still a bit elevated, but I suppose not as bad and still manageable. But for some reason my WBC jumped to 44k, and is probably what caused my intense pain last night. The admitting doctor was afraid I had an infection so he did a few tests...a spinal tap for spinal meningitis, chest x-ray, took blood and urine samples. So far, all is clear, more results to come later. I was given a hospital room around 4:45am. Mom and dad got here at 3am in emerg room, after having gotten stopped by a cop along the way for speeding with their hazards on--but praise the Lord only got a slow down warning. Ha-I told my brother Chad who had made it by then that he needed to call them and say slow down but oops too late. Oh well, glad they made it asap. They started me on pain medication (NOT morphine as I had a bad reaction to it at Hendrick Hospital in Abilene), but rather on an anti-inflammatory pain med called Toradol. Now I'm on a pain med called diladid. I'm also taking antibiotics zosyn and voncomycin to get my WBC down. The pain is pretty much subsided. yeah! Hopefully, the on-call doctor for Dr. Fay this weekend will be in soon and we can figure out what the next step is.

Thank you all for your prayers. Would love visitors if any of you are near the Dallas area. God is good and has been so faithful during this time.

"His strength made perfect in our weakness!"

Thank you Lord!

Pain, pain, go away...come again another day...

The last 48 hours have been probably the most pain I've had since the hospital stay in July in Abilene. It began in my arm, and moved to my hips, back and legs. It always makes sleeping very difficult. I'm usually counting the hours to be able to take another dose of Advil (every 6 hours). I tried to sleep it off today and was pretty lazy, aside from trying to do some choreography for an audition I have to run tomorrow for one of my jobs at Casa Manana. I'm getting to choreograph for their children's musical, Jungle Book. I've very excited about it. It'll have Equity adult actors for the main roles, and chilren for the ensemble and younger parts. The pain made it a bit hard, but God has allowed the pain to subside somewhat and now its just in my left arm.

Another bit of frustrating news is that this new "miracle" pill they wanted me to start taking on Thursday-Gleevec-is taking a while to get approved. Turns out, because its such an expensive and major medicine to take, that the doctor has to "pre-approve" it, meaning not just write a prescription or fax over his signature, but literally call the insurance company and state why I need this medication. I just got off the phone with the insurance company, and they said it'll be at least 2-4 MORE business days before I can get the Gleevec. Grr...Ok Lord, help me to trust You during this time, and not get irritable. For those of you who know me well, this is definately a challenge for me, but God is trying to teach me patience, love for those dang (ahem) insurance people, and to remember that He is good all the time. I just read Meredith Stedham's blog entry and if you know her, I would highly suggest following it (even if you don't!). Her journey is amazing and much more crazy and challenging than mine as she is dealing with breast cancer. She definately has the right perspective and I'm inspired by her joy and peace through it all.

Thanks so much for your prayers and I am praying for y'all as well.

"For He said to me, 'My grace is sufficent for you, for My power is made perfect in your weakness,' therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 2 Cor 12:9

Health and Africa

Thanks for reading my blog! This is just an easier way to communicate more effectively what's going on in my world! Here is the latest health update...

-I went to the dr again this past Wednesday. His name is Dr. Joseph Fay, one of the oncologist/hematologists at Baylor Medical Center in Dallas, where I am going now. After the recent bone marrow tests, he has come to the conclusion that either I have a condition known as "myloproliferative disorder" of the bone marrow, or I have chronic myologeous leukimia. Either of these conditions would make the same treatment necessary. The doctors can not come to a complete diagnosis of either one of these, however, as the same steps are necessary in both cases, we are proceeding on. That treatment will involve a pill that I will start on next week called Gleevec, a medicine used to treat chronic leukimia patients. It is a mild form of chemotherapy (w/o any of the bad side effects), that will hopefully send my white blood cells into remission, and allow me to feel much better. The doctor is going to go ahead and pursue a bone marrow tranplant donor, in case one is necessary in the future. Hopefully however, the Gleevec pill will work well, and the transplant will be an option only later on. However, if it doesn't work, and/or if my condition gets worse, then they will accelerate the donor/transplant process, to pursue that faster. Thank you for everyone who has offered their bone marrow to me should I need it! They are going to go ahead and type my brothers, because full-blood siblings are usually a pretty close match. If not them, then they have to use the American Donor List, which anyone can be on, you just have to be typed at a doctor's office and be put on the list. That is the latest update. God has been so good in giving me peace and support through this whole time. I am so blessed with incredible family and friends who are praying for me constantly and honestly, I am confident that the Lord is using this whole experience for my good and to bring myself and others closer to walking with Jesus intimately. That is the purpose of our lives and should we get 100 more years on this earth, or 1 more day, God is good and as Paul says, "for me to live is Christ and to die is gain." (Phillipians 1:21)

Something else that I am really excited about coming up is my trip to Burkina Faso, West Africa. I'm a member of a church body in Ft Worth called Southside City Church, and we are partnering with the ministry called Heal the World out of Irvine, CA to begin the process of teaching English in Burkina Faso. This past summer, they opened the first English Language Institute, where 150 students were able to be taught English, as well as learn about Jesus and the Word of God. We will be doing this on my trip as well, which will be happening Oct 5-12. I will be writing more about this trip soon, but would definately covet your prayers about this trip, as it will be such a great opportunity to love on people who circumstancially have much less than we do, but are people just like us. Pray for God to open up doors there, for the finances of my trip and others going, for the people suffering with HIV and AIDS who we will be getting to love on and minister to, and most of all the we would love these people as Jesus would and grow closer to them and Him thru the process.

Thank you for taking the time to read my update. Please let me know how I can be in prayer for all of you.

By His Grace,

Luke Longacre