We're still here...

Hi All!!
Wow!! It's been over a year since I updated on here.  I have decided today that I would begin blogging again.. I will use this as a means to update about Derek's health, for those of you who are not on our facebook, or for those of you who are but would like a little more insight into our thoughts, or exactly "where we are in all this" :)
I guess first things first... a quick update:
I decided instead of typing it all myself, I'll just copy and paste Derek's facebook status from February.  He says it much better than I...

"Well, met with a medical oncologist yesterday and went over the written PET scan report. So, according to man's report (short version): more tumors revealed, the cancer has spread, Dr.-"I suggest the 'standard' chemo and radiation, but it will only be to prolong life, and is not curative..." Really, that's all man can do? No thanks. I will believe in the report of the Lord, who says I am healed, ..."by His stripes!" It's time for me to son/man-up and to walk in faith, active faith, good faith. Faith will be my shield, my defense against the one who comes to steal, kill, and destroy...defying what God has said and promised me in HIS word.... and yes, that Word of God, will be my sword to severe the head of the giant(s) rising up against me. This weapon that has 'formed' ... shall NOT pass/prosper/penetrate further in the name of Jesus! We will speak to this mountain and command it to MOVE! I am highly favored of God. He sent His son, my Lord, My Jesus,My Deliverer, to CRUSH this! Jesus is SEATED. It is done. I will praise Yahweh and declare His words of truth over me. His word is life and medicine to my bones/flesh. His word will not return to Him void. It will accomplish what He says. His Spirit whom raised Jesus from the dead shall quicken my mortal body. I am fearfully and wonderfully made. Fear not, resist the devil (and his manifestations), and he will FLEE! "Fear ye not, stand still, and SEE the salvation of the Lord...for the Egyptians (the enemy who boasted said 'I will pursue, I will overtake, draw my sword, my hand shall destroy them')...ye shall see them again no more, forever." "The depths have covered them (the Egyptians): they sank into the bottom as a stone." (from Exodus 14-15) He says to me, "I am the Lord your God, I go before you now...I stand beside you, I'm all around you. Though you feel I'm far away, I'm closer than your breath, I am with you, more than you know. I am the Lord your peace, no evil will conquer you. Steady now your heart and mind, come into My rest,Oh let your faith arise, lift up your weary head, I am with you wherever you go." (lyrics from "Come to Me") Please stand with me in intercession, believing and not doubting, that healing will manifest in my body. Speak His word over me. Thank you!" ~ Derek Pressley February 18, 2012

I love him so much!!

Be expecting miracles!!!!

Misty

Answered Prayer and Questions

Answered prayer

I was asking everyone to pray for successful test results to come back from Germany. The German test results are in, and they were successful. The lab was able to harvest circulating tumor cells from Derek's blood and grow them in petri dishes, thus testing Derek's tumor with different chemo agents, as well as, a few top alternative type treatments. We have read the report, but haven't yet sat down with Dr. K to discuss, in detail, the findings. From what we could discern, the report was not written in layman terms;), there were a few chemo agents and alternative agents that were in fact very successful in killing Derek's tumor. As well, as a few that had a "neutral" effect.

After the pet scan results and reading the German test results, Derek and I are both full of questions. We have a scheduled appointment in the morning for Derek to come in on a fast in order to begin the IPT therapy. Dr. K will also go over the German test with us. We are not exactly sure, what our plan is completely until we are able to discuss our questions and concerns, etc. with Dr. Kotsanis. We want to come up with the best plan for Derek's long term success.

Questions

We have found out, that the chemo agent that had the highest kill off rate, is the same chemo agent that would be used in a typical/conventional setting against Derek's tumor. Even though this is the case, and would be covered by Derek's insurance in a typical/conventional setting, it will NOT be for IPT:/ The IPT treatments are around $1600/treatment, plus the cost (now of the uncovered) chemo agent (which I believe ranges from $25 to $50/ treatment). We are praying for provision and wisdom. We know that if this is the direction in which we are to continue that God will provide, as He has in the past.

So with that, I ask that you would continue to pray for us, and specifically for these following requests:

1. Wisdom..that we would be led by the Holy Spirit and not out of fear.

2. Peace in what God is doing.

3. Provision

4. Thankfulness for all that He has and continues to do.

As always, we thank you all so much, for taking time to read about us, your continued support, encouragement, and most especially.. YOUR PRAYERS!! He hears and He answers!!

~Misty

Good Report, Yesterday:)

Whew! What a crazy two weeks we have had! After what felt like two weeks worth of 'roadblocks', yesterday's Pet Scan was such an awesome surprise!!

At first I thought I would give an account of the two weeks worth of frustration, but instead... I'll just say .. I have been edgy. AND for two weeks it has FELT like NOTHING has fallen into place the way I THINK it should.. it's a very long story, and I promise there is a good moral lesson in it..or at least I learned something, but for blogging sake, etc.. I'm just going to get right to the good stuff. (I'm cutting down your reading time, you can thank me later :) PLUS..it is exhausting;)

THE SCAN RESULTS:

1. The tumor growing on the Parotid gland is BENIGN!! (THANK YOU, LORD!!)

2. The tumor in Derek's leg is contained there and there is "NO EVIDENCE of metastatic disease", as Dr. Chacko puts it. (I like that!)

3. Not ONLY is the tumor still contained in the leg, BUT ALSO the SUV values have gone down... DRASTICALLY. ( I so wish I you could hear my voice, etc. as I hear how this sounds in my head).. Last time we were in for a scan in October, the suv values were up to 7.7 at the highest/hottest spots. The 'hot spots' which are now, much smaller in size, have suv values with a range of 4. (something) to 5.3 (at the hottest!!). Most of the tumor is below a 4! (Remembering that anything with an suv value of 5 and above is considered cancerous.)

~While we are not finished, by any means, and still have a battle ahead...this is all REALLY GREAT news, especially considering that we have been off of any consistent treatment since November. In fact, I was really preparing myself for a more negative type report (Oh ye of little faith!!). Here are some of the phrases that Dr. Chacko used while talking to us regarding the scan results:

"Your immune system must be holding it off, keeping the cancer in check."

"You have been off of the DMSO treatment since November? I have nothing to attribute these results to...it is almost , I don't know what to say..I almost want to say this is miraculous!"

"Maybe we should make a serum using your blood."

My confession:

1. I am going to say, I have NO IDEA what God is up to, but He is definitely up to something ..and any time I get to thinking I know ANYTHING, things change and I realize I KNOW NOTHING and..

2. I have NO (zero, zilch, zippo) control over ANYTHING!! (perceived 'roadblocks'!)

3. I have had a really bad attitude because I thought I knew, (see #1).. I thought, that at some point things should start getting better (last scan wasn't good results) and I was thinking we should be moving forward; the tumor in Derek's neck FELT like we were moving backwards. I just felt like, "Dang it!! Why are we having to deal with this too?" God forgive me and my lack of faith!! and....

4. What I perceive as limitations (roadblocks, see #2), are nothing, completely non-factors to God.

5. He has His timing (see #2 and #4) and it IS perfect and I have mine...and they are not the same;)

Our next steps:

This Thursday, tomorrow, Derek has a doctor's appointment with our family practice doctor in order to get on blood pressure medications, so that we can get his blood pressure down before beginning IPT treatments on Monday, March 14th. (I will post soon, giving information about IPT)

Updated prayer request:

1. Thank Him!! Join us in thanking Him for the super encouraging report yesterday, that can only be attributed to Him!

2. Wisdom...there are still decisions to be made regarding treatment from here.. we are at a good place, however, we don't want to lose any of the ground that we have gained. Although, at this point we are feeling very very confident..we are on the winning team!

3. Derek's continued health.

4. His continued provision, both financially and otherwise.

Thank you all for the love, support, and above all prayers!

Love always,

Misty

The Power Port is in Place

HI all!
The port placement procedure went well. We spent Wednesday night with family, which was awesome.. as we were literally less than a five minute drive from the hospital! I was able to leave the kids sleeping, while I took Derek to the hospital at 7:30am. I stayed with him until they took him away for the surgery. I then went and woke the kids, made sure everyone ate, loaded the van and back up to the hospital we all went. We were not there long, at all, before the nurse called me back to speak with the surgeon and to see Derek in recovery. When I walked past the curtain, Derek was sitting up and looked great. The nurse brought him something to eat and allowed the kids back to see their Daddy. We stayed in recovery for about two hours. Here is a picture of Derek eating in recovery. He wanted me to take a picture with my cell phone so that he could see what it looked like.

Our next step..

Monday, Derek will have another appointment with Dr. Kotsanis. That evening, Derek and I will travel to Oklahoma City, for another pet scan to take place on Tuesday morning. We will be staying the night in the Hyatt..thanks to a dear friend who not only booked our room (God bless you, Jennifer!! Thank you so much!!) I will update, as soon as I am able, after Tuesday's scan.

Other than that, we are scheduled to begin treatment (IPT/chemo), March 14th. For the first few weeks, Derek will receive two a week, then will drop down to only one treatment per week (I believe). I will give a more detailed account about this particular treatment soon.

Updated prayer requests:

1. Benign tumor on the parotid gland.

2. Successful German testing (cell/markers found and harvested, and an effective agent against Derek's tumor)

3. Traveling mercies.

4. Wisdom.

5. Finances.

6. *Above all.. God to be glorified!*

7. Thankfulness that He is.. our sustainer, comforter, provider and so much more .. Thank you, Lord that you are MORE THAN ENOUGH!!!

God bless you, Friends!

~Misty

Andrew Peterson - Dancing in the Minefields (Official Video)

Be sure to scroll to the very bottom of the blog page to pause the music player before playing the video.

Blood draws and meeting Dr. Meyers

Tuesday, February 22, we met again with Dr. Kotsanis for more blood draws/lab stuff and then that afternoon we met Dr. Meyers, the Ear/Nose/Throat dr. We really like them both.

The mornings appointment was mostly lab stuff.. Dr. Kotsanis's office set up an appointment for Thursday (one week from today, March 3.) a port placement surgery..this will be a day surgery. I'm not sure of the doctors name, yet, who will be performing this, but it is pretty standard, this doctor performs these daily. It's a small procedure. The port will is similar to the Picc line that Derek has had previously. He will receive intravenous treatments through the port. Nurses have such a difficult time locating Derek's veins, so this will be the best solution, not to have to dig around weekly to begin IV's. We will not have the German test back, in order to know what chemo to begin, so for now, they will begin other treatments, such as high dose vitamin c through the port. This Dr. Kotsanis is a mover.. we will begin treatments ASAP!! We discussed another PET scan, to have a baseline as to where we are beginning.. again;) Derek is due one, it's been a little over 3 months since our last one in October. So we will be traveling to Oklahoma City for that ASAP:)

Next, we met Dr. Meyers for the first time, and we really like him. He is friendly and warm..very different from most of our doctors:) He is alos considered THE GUY for the parotid gland. He looked Derek over and asked a series of questions. After examining Derek and asking his questions, he explained to us that 1. All the 'red flags' that he would look for that would point to the tumor in Derek's neck as being malignant where not there! (WHEW!), however, Derek does have a rather large malignancy in his leg, so we need to be sure. 2.) He isn't going to go in there and remove it with out knowing what it is. SO.... we need a PET Scan.

All of Derek's previous scans have been from the neck down, I beleive. I know in the past they have looked at this lungs, spleen, and various other organs where liposarcomas like to travel. Up to this point all of those areas have been clean, and we are not expecting anything other than clean scans this go around with the exception of Derek's leg, obviously. This scan however, will include Derek's head in order to look at the tumor growing on the parotid gland. We are praying for that tumor to be benign. We are trying to scedule that scan for this coming Tuesday, March 1.

I will update more as I have information. So for now...

Please agree with us in prayer:

1. We are able to get into the Pet scan on Tuesday.

2. A good plan for the kids and traveling, etc.

3. THAT THE TUMOR GROWING ON THE PAROTID GLAND BE BENIGN!!! ***

4. Easy day surgery on Thursday for Derek.

5. Traveling mercies.. if all this falls into place right, we will be traveling to OKC Monday evening and back home Tuesday evening, then traveling to Grapevine Wednesday evening and back home Thursday after the procedure. (Shuffling kids during the process)

6. That they have a successful testing of Derek's blood in Germany #1. that they are able to harvest tumor cells from his blood and #2 that they are able to find an effective treatment.

Thank you~God bless,
Misty:)

Update/Prayer requests

**This is actually a post I made on Facebook last week, we have now been to both of these appointments and I will update soon for those:)**

Whoa.. I don't know where to begin.. we met Dr. Kotsanis this past Wednesday, and there is so much information that we received. For now, I will just try to hit the most important things that are happening right now..and maybe fill in the blanks as we go w/details and such. First thing, I suppose.. Derek had blood draws and some lab work that we could here, in Sherman yesterday. We go back to Dr. Kotsanis this Tuesday for more labs, blood draws, etc. One of the draws that day, will be sent to a lab in Germany. The lab there will harvest cancer cells from the blood, grow them in about 40 different petri dishes, then inject each with different chemo agents, as well as, the top alternative treatments in order to find which treatment is most effective agains Derek's particular cancer. (I will have better detailed information concerning this after Tuesday.) I had a question concerning this..I wasn't so sure that I wanted cancer cells to be found in Derek's blood. However, this test is extrememly EXPENSIVE and is NOT covered by insurance.. WE REALLY WANT TO FIND A TREATMENT THAT IS EFFECTIVE! So.. please be in prayer that they are able to find those "markers" or whatever, so that they can find an effective treatment. We were told that this test takes anywhere from two to three and a half weeks, in the meantime, Dr. Kotsanis told us that we will not just be sitting here, waiting.. we would begin a treatment plan. On Tuesday, we will also be meeting with an Ear, Nose, and Throat doctor, Dr. Meyers at UT Southwestern. He is supposed to be one of the best of the best. His area of expertise is the parotid gland (this is the gland, which the tumor in Derek's neck is growing). Dr. Kotsanis did say that at this time, it is his belief that the tumor is benign. He felt 90% sure.. we will go with that. I will update more about this, as we find out information, but at this time..that is all we have.

With all that being said, here are our specific prayer requests at this time:

1. That the tumor in Derek's neck is benign.

2. That they are able to find those "markers" or cells needed to grow Derek's tumor in petri dishes.

3. That once they harvest those and grow them..that the tumor does respond to a treatment.

**successful testing***

4. My kids. Everyone is really anxious around here and we are leaving them a lot with family and friends, and will be for a while. It's tough. I know a lot of kids have been through much worse, but it's still tough.

5. Finances, we will be going back and forth to Grapevine for a while, and whatever insurance doesn't cover comes out of pocket.. it gets expensive, but I know that God provides.

6. Wisdom for the doctors.



God bless,

Misty

Josh Wilson - Before The Morning (Official Music Video)

~Psalm 30:5 .... there may be weeping in the night, but JOY comes in the morning.
I know that something bigger than ourselves will be birthed out of this experience. I feel it, deep within my spirit...that this dark chapter in our lives is part of a much bigger plan. He holds us in the palms of His hands. He is literally the One holding us together. I know that ALL things work together for the good of those who love the Lord. He holds our future, and we have a future full of hope. He has our best interest at heart...ALWAYS. Even when I can't see it..I can trust it. We are here for His glory and His purposes...it's not about us. We are not here for ourselves, but to bring glory to Him is our highest purpose. Someday, this all WILL be a memory, and we will look back and say, "Look what the Lord has done!!"
~hope this song blesses you,
Misty

Jessica Potter Photography

You may have noticed the updates to our blog..including all the new pictures:) All these photos were shot by Jessica Potter. We enjoyed Jessica so much... she is friendly, fun, bubbly, creative and super with the kids! I have to tell you this is the first time, in a long while, that we went to take family photos and Derek and I didn't walk away frustrated (sweating, grumbling unsavory words..you parents know what I'm talking about)!!! In fact, we all loaded back up into our van and drove off with smiles still on our faces..it was completely relaxed!! What I love most about these pictures...she really did capture my kids!!! Little gestures and mannerisms that I see everyday, that a photographer who was 'posing' them could never get!! I think this is the difference..rather than posing us, she just told us where she wanted us and then it really felt more like we were just hanging out. When Selah would move out of place, Jessica just kept taking pictures. Welll... I have been trying and trying to post a link to a slideshow or post a slideshow...to no avail!! Anyway, I posted a few on here, I hope you enjoy!!

Thanks for looking:)
Misty

To Tulsa and Back

Dear Friends,
Much has happened since I last posted. We traveled back to Tulsa, July 18th to meet the new doctor, get more (I.V.) bags, and a new 'tweaked' protocol from (the new doctor) Dr. Jennings. On our way, our van broke down...literally just QUIT on the Indian Turnpike!! THANK GOD for His grace and mercy..and once again providing!! It's a long story, but to make it short.. we met two, wonderfully sweet, good Samaritans!! Anna stopped first. She was in a small car and was unable to "help", but ... insisted on staying with us until someone could. Next, a man in a large dually stopped and offered to pull our van the 20 miles to the toll booth, where there was a gas station and McDonald's, and then take us on into Tulsa to our doctor's appointment at 9:30. Selah and I rode with Anna to McDonald's where she bought our breakfast!!! Derek came with Mr. Henry (aka "Cowboy for Jesus", as he wore a cap that cheerfully proclaimed, "Cowboys for Jesus!"). After Selah and I ate, Anna went on to Oklahoma City. We left the van in the parking lot and Mr. Henry drove us into Tulsa. We were only 15 minutes late for our appointment!! Mr. Henry was a Godly, polite man... using "Yes, sir" and "Yes, ma'am". Anytime we thanked him for his kindness he always responded by letting us know, "I'm blessed!". ... AMAZING!! From the clinic, our buddy, Troy, picked us up and brought us to meet his family at 'Applebees' near our hotel. We enjoyed lunch with Troy, his wife, DeEtta, their two girls Naomi and Annebelle, and little, Colby. We declined an offer to stay in their home and instead opted to go straight to our hotel to SLEEP!!! The next morning, Derek's mother's friend, Cecil, drove from Denison in his pickup, to get us to our next appointment and then to tow our van home on a 'dolly'. ... Where would we be without the help of others??!!!! I honestly, sometimes do not understand God's ways.. I don't understand why if we are in this storm, why we can't just make it to our appointments without a hitch, but.. either way, HE PROVIDED!!! All I know is this.. throughout this whole ordeal we are constantly finding ourselves in a position where we must absolutely rely on Him and the kindness of others!!!

I am ashamed to admit, that Sunday evening, back at the hotel...I found myself just drained!! I was a bit frustrated... I knew God had provided, and I knew He got us where we needed to be, thanks to the "cowboy for Jesus", but I just couldn't see...how our van breaking down was going to "work together for our good". The next morning, a friend posted a message to me on Facebook saying, "When you can't see His hand, trust His heart." So true. I have found myself in that very position often during this past... almost two years, not always able to see His hand, but LEARNING to trust His heart.

So...now we made it to all of our appointments. We came home with two prescriptions : one for thyroid and one called Low Dose Naltrexone, four bags, numerous supplements ..including : milk thistle and iodine for liver support, Derek's picc line resutured and numerous supplies (dressing changes, etc.) We are excited about our new protocols!!! We are already seeing and feeling differences in the tumor..sometimes it swells (HUGE), but then comes back down, and definitely feels different. Something is quite obviously going on in there!!! Derek has had some negative side effects including body aches and head aches. We just back off some of the protocols during those times in order to give his body time to 'catch up' and deal with the tumor 'die off'. Please check the link below to read about LDN; it's very encouraging!!

http://www.brave-souls.com/LDN/LDN%20and%20Cancer.htm

Finally, I'm going to close for now, but I can't with out mentioning... please keep our dear friends, the Postons, in your prayers. You may remember our mentioning Stan and Janet in past posts.. we met this wonderful couple in November while going through treatment at Camelot. Stan was battling an aggressive brain tumor. I am so sad to say, that Stan went home. He passed away July 24th. He leaves behind Janet, their four children, a son-in-law and three grandsons. This is such a close knit family. We are very blessed to have gotten to know Stan and Janet and feel as though we know their children. Stan was an intelligent, Godly man of character. His family was obviously his pride and joy, as he spoke of his children, son-in-law and grandsons often. I know they must all miss him terribly. He was a tall, broad shouldered man with a smile that lit up the room!! Derek and I have shed many tears ... it is a difficult loss. The connections made with others during our stay in Tulsa were deep felt. I guess it is as Noel (from CCC) says, "Intense situations bring about intense relationships."

~Love, Misty

To Get Caught Up

Hi all!! It's been a while since our last post, so I thought I'd briefly catch everyone up to speed..

We traveled to Oklahoma City June 29th for Derek's latest pet scan on June 30th. After the scan, Dr. Chacko was again gracious to explain his findings. The suv values were again down (YIPPEE!!) to 6.4!! If you remember back in November the hottest "hot spots" were 8.8, I believe, then down in March to 8.3, at the hottest, and 7.9. The significant drop tells us that what we are doing is not only holding it off, but working, as the tumor is becoming less aggressive. The tumor was slightly larger, but that could be attributed to tumor death..causes edema, or it could be slightly larger. Either way.. the cancer is becoming less and less aggressive. PROGRESS!! Whether it be small or large.. progress is still progress! We will take whatever we can get, especially considering the aggressive nature of sarcomas. We are battling a beast, and we are gaining ground!

As many of you know, we are using alternative treatments. We decided this after MUCH research and prayer. I know that the steps of a righteous man are ordered, and looking back over the past (nearly) two years, I can see God's guiding us along our way. I am grateful for His grace and mercy throughout this journey. Going alternative, while cheaper than traditional chemo and radiation, (not to mention safer and more effective!) is not covered by insurance, so most of the expenses (with the exception of the scans, blood work, and doctor visits) come out of pocket. God has and continues to provide in some of the most unimaginable ways!! We are blessed again by His provision, and will head back to Tulsa this Sunday, July 18th at 5am. We will be taking Selah with us, and leaving Nate, Hannah, and Caed with friends and family. We are leaving at 5am, as Derek's appointment is Sunday morning at 9:30. Camelot has a new doctor on staff that commutes to Tulsa every other weekend. We will be seeing her on Sunday, then staying until Monday when Derek's picc line will be resutured. (We have had minor issues with the picc line... sutures tore, sweating, seadooing, lake visits, swimming, etc. so, it needs to be checked.) We will then come home with more treatment, possibly a new treatment plan after this last Pet scan. We are excited to get to meet the new doctor, as we have heard some really positive feedback concerning her.

As always, thank you for the prayers and support... it means more to us than we could ever convey. We have been given supernatural comfort, grace and peace. We have felt His presence.
Misty

Getting Aggressive

After the PET scan in March, we knew that we needed to get with our team in Tulsa, at Camelot Cancer Care, and come up with a new, tweaked, treatment plan. As I stated in our last post..we were not as aggressive as we could have been, cutting corners due to financial resources. A dear, dear lady, that goes to church with Derek's Granny, had given us enough money to cover our hotel expenses for the duration of our three week stay, this past November. She once again offered her help financially. We thank God for her!!

The week before Easter, Derek headed up to Tulsa, by himself, in order to save on hotel expenses. He left early Wednesday morning and returned late Friday night. He stayed with our favorite nurse and her family the two nights there. He had, I believe, three different types of treatment those three days...nothing that would make him feel ill. He returned home with another 20 day supply of the drip treatments with DMSO, and some oral supplements, etc. The new plan: an oral supplement two to three times a day, DMSO drips once a day, a leg rub solution twice a day...etc. Also included, no more spreading the four day bags out over seven days! So, we began immediately!!

The reactions/results thus far: very mild nausea..nothing he cannot tolerate or bear; swelling of the tumor (see last post about tumor death causing edema ~ YEEHAW!); extreme headache...which lasted a few days, but has since subsided (Thank God and thank goodness our favorite nurse Belinda doesn't mind (or at least puts up a good front) answering her phone at night!). What does all this mean? Derek was experiencing what is referred to as "Herksing" or the "Herksheimer's reaction". When toxins are released in the system, it causes flu-like symptoms....in other words...a GREAT SIGN!! These symptoms tell us that all the treatments are working! Even though it is very hard to watch, a little part of me rejoices!! I hate that Derek has to go through all of this, but I am so grateful that we are winning. We have been told by several patients who had chemo prior to going to Camelot, that their worst day on these treatments were nothing in comparison to their best days on chemo!!

Latest PET Scan Results

Derek had a PET Scan on Wednesday, March 10th. A few days before the Pet Scan, I spoke with our friend, Janet Poston, from Tennessee. We met her, along with her husband, Stan, at CCC (Camelot Cancer Care) this past November while Stan and Derek were both being treated. Janet had told me to call ahead and ask if we could speak with the doctor who reads the scans, Dr. Chacko. I am grateful to God that we did, as he was very informative and thorough. It is not within Dr. Chacko's job description to meet with the patients. He usually just reads the scans and faxes his reports to the ordering doctor, however, he took time to sit down and explain in great detail all that was going on in Derek's body. We feel very blessed to have had the opportunity to meet with him and look at not only this scan, but November's as well. We were able to compare the scans, side by side, and see the changes in the tumor. Knowing the results and having answers within hours rather than waiting days for a phone call was a HUGE relief. There are no words to describe the anxiety days and hours leading up to these scans and in the wait for the results!!! It was wonderful to leave Oklahoma City with answers!! Also, these Pet Scans are very accurate at reading what is going on in Derek's body and with the cancer. A comfort to Derek is that this PET Scan uses a fourth of the radiation of Pet/Cat scans!! The trip to Oklahoma City is well worth it!! That plus, after meeting with Dr. Chacko, we completely understand why Maureen (director/owner/operator of CCC) uses and trusts only him. We were told he is one of the best at what he does...and we believe it!

The Results~
Dr. Chacko showed us the scans and explained that while the tumor appears bigger, it is less metabolically active. The SUV values are down from November's values of 8.8 to Wednesdays values ranging from 7.9 to 8.3 at the hottest - meaning the cells are less aggressive. Even though, the numbers are down only slightly, they are still DOWN..progress is progress! He also explained that when it comes to cancer you cannot look at size.. many aggressive tumors outgrow their blood supply, and will appear to be shrinking, just before taking off and spreading. In other words, shrinking does not equal curing...hmmm, imagine that. Also, cell death can cause edema (swelling) and it could very well be just that. He explained that with sarcomas, (Derek's in particular), they are extremely aggressive and usually spread "like wildfire". He told us with most that he has seen (and he's seen many) that is usually the case. With chemo, they can build up a resistance and become more aggressive. He showed us all the of places that liposarcomas usually spread (the liver, lungs, spine, and behind the stomach), all of which are clean...NO METASTASIS!! Not even in the lymph nodes near the tumor.. it is all contained locally!! According to Dr. Chacko, what we are doing is not necessarily 'curing' the cancer, but it is definitely holding it at bay. Now...we had been off the treatments for three to four weeks prior to the scan; and because of financial reasons, we had been spreading the usual, four day bags out over seven days. I feel that we can definitely get more aggressive. We know that what we have is aggressive so we need to become more so! We can't give it a moment... With all that being said, we will be returning to CCC, in order to get with our team and come up with a new game plan. Once we have done that, we will update again.
Thanks for reading and especially for the prayers!
Misty

Update from Derek

I wanted to comment on my journey with cancer (liposarcoma), and my current treatment through Camelot Cancer Care in Tulsa, Ok. For those of you new to this blog, I was diagnosed with Myxoid Liposarcoma with a tumor in my left posterior thigh in October of 2008. Sarcomas are 1% of adult cancers and liposarcomas are 1% of that. A local surgeon tried to take all of the tumor out, but...it came back, of course. Needless to say, I started out my journey with cancer with a lot of fear and confusion. I went to CTCA in Tulsa, OK only to be told this by a doctor: "I don't see these types of cancer, this is rare, I don't know how to treat you, I am concerned for your life, I don't know what the next step is, you need to be at either Sloan-Kettering or MD Anderson!" At least he was honest. So, I went to Houston. MD Anderson was like a cancer holocaust. I felt like a number, not a person. I have never seen so many pale, scarred, hairless, and scared people in my life. My wife kept bursting into tears. I took their scans, waited patiently for the results and their coveted medical opinion, and decided never to return. I respect most doctors, but this time, I felt they did not have the answer for me. I decided, much to my wife (at first) and family's dismay, to go alternative to "cure" my condition.

After countless hours of research, I realized that I had a "terrain" problem. I had to make my body a hostile environment to cancer. I have embraced many alternative protocols, but more specifically the Bill Henderson Protocol and those on cancertutor.com . I also embrace and agree with Todd Bolinger's book, "Cancer: Step Outside the Box". Through these, (along with many other protocols, faith in God, and trust in my body's ability) I overcame my fear of cancer. It has now been over a year since my diagnosis. I recently was urged by family to consider getting treatment at a clinic so as to not get backed into a corner with the cancer. My mom said, "If I were to sell stock and pay for it...would you go somewhere to get help?" I told her there was only one place that I would consider in the states, and all of my research pointed to Camelot Cancer Care in Tulsa, Ok. The science behind the DMSO made sense to me. I also was also interested in the work of Dr. Coley and the induced fever therapy for cancer, specifically Sarcomas, as mentioned in the Ralph Moss reports.

Camelot Cancer Care

I started treatments at Camelot with the DMSO and other ingredients on Nov 2-21, 2009. I had a recent PET scan on the 23rd and the results showed a large 8 cm tumor in my thigh, with outer 8.8 SUV value,...BUT, with a necrotic center!! The center of the tumor is dying...clinic director Maureen said, "We have it on the run!, We can't stop now, we can beat this!" I also have NO distal metastatic disease!! I am encouraged by the results.I am continuing with take- home treatments. The people at CAMELOT are phenomenal. They are passionate about what they do. Queen Maureen- she is feisty and not afraid to call it like it is. She comes across awkward at first, but then, you see the Einstein-like genius emerge when she starts talking cancer! When I think of Maureen, I think of Emily Dickinson's poem, "Much Madness is Divinest Sense" Within 5 minutes of being there, I knew I was in the right place. They talked my language. Lady Belinda, the vascular nurse (she loves what she does,she said I had a "beautiful" vein) I have never met anyone more skilled, more passionate, more caring or determined person to have at my side. Sir Noel -a true nobleman, gentleman, and friend. It was Noel that gave me analogies and pep-talks, that encouraged me to stand strong. Just ask for his speech on the primary immune system and the Spartans!! There was also John, the clinic manager/guitar prodigy, and... Meticulous Michael, the IV tech. Oh, and not to forget, Noel's dog...the Camelot mascot...CHAMP the doberman! I count myself blessed to have met these individuals. They continue, as I write, to monitor my progress, coach, and encourage me in my fight against this. I feel like the captain in the Apollo 13 movie, I am out there in space with dangerous odds, but I am not alone...and I know that even if all I have on board is duct tape and few canisters...Maureen,Belinda, Noel, John, and Micheal will not stop until they see me back home safely!

Update: I have a few more iv bags to finish and then I will be scheduled for another PET scan soon in February. I feel great. Still believing that the tumor is dying or necrotic and will eventually dissolve or may be able to be removed safely with surgery. Please continue to pray for me. I covet your intercessions on my behalf. My utmost thanks to those who have given to us financially. Your kindness is overwhelming.

Derek

Slowly, But Surely Beating Cancer Butt!

Hi Dear Ones!
I felt it was time to give a quick update. God is more than good to us. Things are going well...we are continuing the treatments that we began in November at Camelot Cancer Care in Tulsa. I administer the daily drip treatments through his Picc line, and I change his dressing every seven days. If you know me at all, you know that I have an extreme fear of needles (a phobia I've had since childhood)! I hate needles, syringes, IV's, and I become very weak, even to the point of passing out (a time or two) at the sight of blood!! So...most of these things are COMPLETELY out of my COMFORT ZONE! However, I can tell you (TESTIFY!), that God has given me a supernatural strength to get through this time. I can also, honestly say, that I absolutely love taking care of Derek in this way. I count it an absolute joy to walk this path with him and to feel like I have a part in his healing! We have become such a great team over this past year. Derek continues with the supplements, juicing, diet, and enemas. I help him with the juicing, supplements and meals, where I can. We are blessed that Camelot staff has come up with a wonderful plan for kicking cancer booty and long term health for Derek. A plan that hasn't completely taken over our lives. Derek continues to work and feel great! The treatments do require time, effort and energy..but are not a hassle at all and I know things could be so much worse! I feel such thankfulness, to God, for the path in which He has so obviously led us!! I can so clearly see God's hand in every step that we have taken over this past year and three months and His provision throughout is nothing short of overwhelming!! Just as we run out of a treatment bag, God's unexpected provision shows up, yet again...in the most amazing ways!! The director, Maureen, and staff at Camelot are amazingly generous (outright GIVING on more than one occasion) and will literally work every angle to provide us with the treatments needed to finish this fight. They absolutely have gone above and beyond for us. Even to the point of offering to drive the three hours from Tulsa to us, here in Texas, when our transmission went out on the van. That is right! John, from the clinic, offered to make the six hour, round trip to bring us the supplies and treatment bags! Instead, our buddy, Troy, who lives up near Tulsa and is working in our area, delivered the bags! Thanks Troy ! The financial help from friends and family is amazing every time..in that God's timing is perfect!! It never fails (His love never does!) that a need arises and the EXACT amount comes in the mail from an uncle or cousin. So many have blessed us! Thanks for being God's hands! We have another PET Scan in February, to see how much more of the tumor is dead (I hope the whole thing will be dead!), so please keep us in your prayers!
God bless!
~Misty

Welcome 2010!!

Wow! What a difference a year makes!! This time last year, we were months into 'the diagnosis', without a plan, and unsure of what our next steps should be. We had been to Cancer Treatment Centers of America (in November), only to be turned away, then sent to M.D. Anderson (in December), and we were waiting on their 'treatment plan'...I was feeling anxious, scared, and quite honestly, as the New Year was being celebrated, I wondered how many New Year's Derek and I would face together.. BUT that was THEN!! This is NOW...as we celebrated this New Year, I felt so full of HOPE!! I felt tremendous peace. I realized that I lost something in 2009 that won't be joining me in 2010...FEAR! I am so hopeful that this is the year that we will see cancer eliminated from Derek's body!! Keep praying, we are very excited to see what the February PET Scan reveals!!
~This is going to be a great year!!
May 2010 bring nothing but blessing your way!!
Misty

PET Scan Results

We got the phone call from Maureen Long, the director of Camelot Cancer Care, at about 6:40pm this evening. Now..this was just a phone conversation, I have not seen the PET Scan pictures myself...and I was listening in on the conversation with my head up against Derek's head, while his ear was to his cell phone...and I do not know or understand all that there is to know, more will be explained when Derek and I travel back to Tulsa next week.

Good News!~
1. The cancer has not metastasized into Derek's torso or anywhere else.
2. The center of the cancerous tumor is DEAD!!

What this all means and then the slightly negative part...
The cancer has not spread...self explanatory. Tumors die from the center or inside-out...so we know what we have been doing IS WORKING!! With PET Scans they measure SUV's (?? I think that is the correct term) and anything with a value of five or above is considered cancerous. The center of the tumor is dead..the cells surrounding the center measured an 8.8 (I believe). Also (here is the slightly negative part) there was an upward streamline towards a lymph node that measured a three point something and then (and I apologize to family that when I spoke with you I did not know this part, this is the part I missed and Derek had to explain to me later.) there is a place near the lymph node that measures 4.1. Now, again...anything 5 or above is considered cancerous, so these numbers are low enough that they are not even considered cancerous...we will keep plugging away and they will not have the opportunity to become cancer!! Maureen said that as cancer is dying it can try to recolonize and move else where...and she believes that is what is happening...or it could be that before we got to Camelot, that the cancer was trying to move. Whatever the case...what we are doing is working and we cannot stop!! We just got to keep hammering away. Maureen said, "We can beat this! We know that what we are doing is working." Because the cancer is trying to move, we may have to tweak things in our game plan slightly...BUT PRAISE GOD!! It has not metastasized and IT IS DYING!!! I cannot tell you how I love to hear it and I love to say it...the center of the cancer is DEAD... PRAISE GOD!! THANKS for all the prayers... we will beat this! God is good.

Special Thanks to Kirsten and Her AMAZING Friends!!

I wanted to say a special thank you to Kirsten. I have no idea what the email said that she sent out to her friends and then they passed along to their friends, but I have never been treated so warmly by complete strangers. We met Kirsten and Joe, her husband, about 12 years ago at Victory Life Church in Durant, OK. They were a fun, friendly couple. We were expecting ..her first child and my second at the same time..in fact our babies were due on the same day! (We didn't have them on the same day.) Anyway, they moved and we moved, we lost contact with one another, and then later reconnected through Facebook. Kirsten kept up through the internet with what we were going through, and told me that she knew many people in the Tulsa area. Before we left for Tulsa, we started receiving cards of encouragement with money from complete strangers!! Once we got to Tulsa, we had more meals than I can count from ...again, complete strangers!! Homemade meals...delicious home baked goods!! We also had...babysitters, hand me down clothes, and offers to take our kids to movies, pizza, etc. It was AMAZING!! This is the body of Christ! This is how the church should operate. I will NEVER forget this time in my life and I most assuredly will never forget the love of God shown to us through strangers!!! God bless you all!!

The Past Three Weeks...Or More..

Whew! Where do I begin???
There is sooo much.. especially since I haven't blogged in SOOOOO long!!

Getting Here~
In my last post I had written about our plans to come to Camelot Cancer Care and at that time, we had the appointment set but nothing more. We did not have a hotel to stay in and we didn't even have the money!! Not long after that post our van broke down and so did I!! You know how it is..when you are coming down to the wire and you are needing to see progress and things happening. You know how it feels when nothing SEEMS to be coming together right!! Thank God that He is never late and always on time:) As everything seemed to be falling apart other things just started falling into place. I won't be able to tell it all tonight, but will try to give the short version:)


We are using a van that belongs to friends and will be purchasing it once we return home. ..Oh by the way, we made it to Camelot Cancer Care here in Tulsa and I am writing this from our hotel room. The money for the hotel...came in the very next morning after the van broke down.. a sweet lady from Derek's Granny's church who lost her husband to cancer! Derek nor I have EVER met her...can you believe that? In fact, we have found some pretty amazing people through all of this and even more...we have found out what a REALLY amazing God we serve. We have had money, cards of encouragement, FOOD!, babysitters...all kinds of things being offered to us in ways that can only come from HIM!!!


Anyway, I'll tell more about all that later... let me get to Derek and his treatments. I know many are wanting to know. ~ Camelot Cancer Care~
Camelot Cancer Care staff is amazing!! I have never met people with such HUGE hearts!! We are at the right place! I believe everyone working and caring for people in that clinic are nothing short of pure genius! They are driven by passion to see people well. We have grown so close to the staff. I will NEVER forget Maureen, Belinda, Noel, John, Heather, or Michael. Maureen is the owner/director...operator...she is a fire ball and I thank God for her. She is Einstien smart...incredibly knowledgeable about cancer. Belinda is one of our favorites!! She is the vascular specialist/nurse. I cannot even imagine how giving she is. It is truly a blessing to have her caring for Derek. We are in great hands. Noel and his doberman, Champ, are dear as well...Derek asks for Noel when he needs a pep talk. When Noel is administering treatments he is so positive and uplifting. He speaks Derek's language! There is so much that I could say about this staff...I just don't have enough time:) While I am ready to go home, I can't even imagine how much I am going to miss these people, along with the other cancer fighters we have met. (I call them cancer fighters...none of them seem like cancer patients to me!)


~Cancer Fighters~ please add these names to your prayer lists... sweet, cheerful Nancy, Stan Poston (and his BEAUTIFUL wife, Janet... such awesome people!! There is so much to say about this couple..Godly people!!), Primo and his daughter Jannet (we should all be blessed with such a daughter) (Please pray for Primo that the swelling on his brain would subside so that he would be strong enough to return to Puerto Rico.), and two new fighters, Joe and then Grant and his family. It has been refreshing to be here with other believers.

Derek continues to feel great. The first day we arrived here at Camelot, a Picc line was placed in Derek so that he could receive the daily drip bag treatments. We will leave here with a bag, which we will stretch out over an eight day period. One bag usually lasts for four days. Most 'fighters' leave with a 20 day treatment to continue on at their home. At this time we do not have the finances to leave here with that, so we are going to just buy a bag at a time. We have a PET scan scheduled for 9am Monday, November 23rd, in Oklahoma City. The results will be sent back here, to Camelot Cancer Care. After a few days we should have the results. We will be heading back home to Texas as soon as the PET scan is finished on Monday. We were advised to continue on with the treatments as best we could for at least another month or two...no matter what the PET scan says. We do not want to give the cancer an inch! The idea is to get us at first ...four weeks down the road..then if we can get the cancer pushed back into a corner four months down the road and eventually four years, we will get to a place where the cancer will not ever return!! This is the goal!! I believe it a is a very attainable goal for us! We know we just have to keep at it, we cannot let up. We will continue on with the lifestyle change (healthy eating and exercising) for the rest of our lives.

Specific prayer requests~
1. Peace!! No fear...no matter what the PET scan results say..
2. Wisdom!
3. That nothing would be hidden!
4. Finances
5. Jannet and her father Primo to be able to return to Puerto Rico
6. These other cancer fighters~ Stan, Nancy, Joe and Grant

Thank you for reading! Thank you so much for all of the prayers and encouragement... God has been good to us!

Camelot Cancer Care

We have been researching alternative treatments and clinics for nearly a year now... We are fortunate to have found a place near us that specializes in various types of cancer treatments and cancers...including sarcomas. We have been led to the Camelot Cancer Care Clinic in Tulsa, OK. They have an impeccable reputation. We have been researching this clinic since March. They have a very effective treatment for sarcomas, which was the main thing we were looking for (alternative treatments for sarcomas). It was very refreshing to finally find a clinic that puts into practice the various types of alternative treatments that Derek has been researching and looking for. I could tell you some about the treatments, but mostly if you are curious or have questions about them it is best to email or call and let Derek tell you about them, because he is a wealth of information:) I can tell you some...he will have a port placement surgery, just as he would if he were having chemo. He will then begin intravenous treatments that same day, I believe, and will continue to have intravenous treatments every single day for 20 days. He will have a PET scan at the end of treatments to see that the cancer is gone. Insurance will only allow for PET scans every three months, so we are still needing to find out if we should go ahead and have a PET scan now and then wait until January to have another one to see that the treatments got it all. There are still details to work out, and some things I'm sure we will not know in full until we get there and get started:)



Because these intravenous treatments are considered alternative and non-conventional, insurance does not cover it, except for the port placement surgery (after we have paid for it, up front, we will be reimbursed) and the PET scans (once every 3 months). Derek's mom is going to use some of her retirement and sale stock to pay for the treatments...close to $10,000. I have to say that even though that seems awfully steep...it is still a great deal cheaper than if we were having the traditional chemotherapy and radiation...those treatments are extremely expensive, even with insurance paying for most ...our deductibles and copays would have well exceeded the $10,000 treatment cost. Mostly...I can not put a price on Derek's life:) Words cannot express my thankfulness to Linda (Derek's mom) and his siblings. His brother and sister let him know that they were not interested in any inheritance..what they want is for Derek to have a long healthy life. They want holidays and family get togethers. They want their nephews and nieces to have their Daddy. Even though, I know that Derek's family does not need my gratitude ...I just couldn't put it into words..there are not enough words to express my appreciation for what they are doing and sacrificing.



We are all going...we are taking the kids with us. We are still making calls about where we will be staying, trying to find the most affordable place. Camelot has sent a list of places that offer rooms/suites and even apartments at reduced or reasonable prices. They sent us a list of about five places to call. Using their list, the cheapest place I spoke with, was offering a suite w/a fully stocked kitchen, bath and two rooms for $65.00 a night, and the most expensive was a lady (whose daughter had treatment w/Camelot) who manages an apartment complex offering us a bottom floor, 2 bed/2bath, fully furnished, fully stocked kitchen for $100.00 dollars a day...$2,200. At this time, we do not have the money for either of those places:) BUT... I have a friend..who has a friend, who has a brother (yea, it's that kinda thing) that works for the company that owns several hotel chains..including Comfort Inn. She is going to see if her friend's brother can get us something cheaper. Where ever God guides, He will provide:)



Derek has cleared the three week vacation/extended sick leave with his boss. His boss told him.."Go and take care of your health and your family. We will cover for you as long as you need us to." However, his boss is not in charge of time off pay, etc. and so some of our time away will be with out pay. We could wait until January, but have decided to go ahead and go through with this plan right now, rather than wait. It is not that Derek is feeling bad or anything. We have just prayed and decided that we would rather go seek treatment while he still feels great, rather than wait until we 'have' to go somewhere.



Even though these treatments are not nearly as rough as chemo..they are still tough. He will have nausea, headaches, fever, chills, body aches, etc. This will not be easy. I will be very honest here, and say that because of that..I have a lot of fear and anxiety. I do realize that it is a necessary part of it to rid our lives from this cancer. I am just a little scared to see him sick, and unsure exactly how sick he will be...again the fear of the unknown. At the same time, the lady from the clinic told us that when he feels awful, that that is a time of celebration, because we know that the treatments are killing off the cancer...it is beginning to take effect. So...I think at the same time I would probably freak out a little if he did not have some sort of sickly reaction.



Derek has said that he is not scared. He continues to be so upbeat and positive, my ROCK...even while I struggle. I have a variety of emotions right now...excitement, nerves, fear, anxiety, hopefulness...mostly that..mostly hopeful!! I am full of hope. I have tremendous peace about this place. I am just ready! Ready to be done!



So...here are our immediate prayer request:

1. Most of the time patients do not need any more treatment than the first 20 days...pray that we would be among those patients not needing to return for additional treatment.

2. Finances to fall into place.

3. Wisdom for the doctors and for us.

4. PEACE...no fear.

5. My kids...just for them in general, this has been a long, tough year and even though they have been absolute troopers and blessings, it's been tough..they have had some heavy things to deal with this past year. I know that in the end we will all be better for having gone through this:) We praise God because we KNOW that He works ALL things together for our good...even what may have been intended for evil, He can turn around in our favor.

6. That we get rid of this cancer and that it does not return. CANCER FREE



**If you all could... from November 1st until November 22nd have Derek's name added to your church's prayer list and keep it on there for the duration of our time in Tulsa..would mean so much to us. I know the prayers of others have sustained us this past year:)**



Much love and gratitude,

Misty