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