Does the Bad News Ever End?

Well as many of you already know, Pat is still in the hospital.  This morning they told us that Pat has VRE (Vancomycin Resistant Enterococcus) in his bloodstream.

Here is what I have learned about VRE.

• Enterococcus are bacteria that live in the digestive and genital tracts. They are normally benign and don't cause any problems in healthy people.

• Vancomycin is a powerful antibiotic that is often the antibiotic of last resort. It is generally limited to use against bacteria that are already resistant to penicillin and other antibiotics.

• Vancomycin-Resistant Enterococcus is a mutant strain of Enterococcus that originally developed in individuals who were exposed to the antibiotic. It was first identified in Europe in 1986, and in the U.S. in 1988. 

Here's why it is a scary situation:  Pat has NO immune system.  In a healthy person, this would really be no big deal.  To Pat, on the other hand, it can be deadly.  He has no white blood cells to fight this infection off.   Antibiotics work best when they have a healthy immune system to work along side them.  Pat's white blood cell counts have been extremely low the past several weeks, and the doctors don't know that they will ever recover.  So they really don't know if they can cure this with antibiotics only.  They have started him on another antibiotic, but if doesn't respond well to that treatment, he could end up going into septic shock, and basically all of his organs would shut down.  

From what the doctor told me a couple of weeks ago, in Leukemic patients, it's not the Leukemia they end up passing away from, it's a secondary infection. 

So please, I beg of you, pray for my husband.  Pray that he will kick this infection like it's nothin'.  Pray that he gets healthy enough to let these alternative therapies work. 

Lord-

I pray that You would give strength to my husband, Pat.  I pray that You would wrap your loving arms around him, and give him peace in knowing You are with him.  I lift him up to you, Lord, and I pray that You would heal him.  I pray that You will take his pain away.  I pray that You will pull him close, and make his relationship with You stronger.  Lord, I pray that these antibiotics will work.  I pray that You will keep Pat here, on earth, for a little longer, as we are not ready for him to leave us yet!  I pray that You would comfort him, in times of sadness.  I pray You would keep Your hand on him, and keep him safe.

In Jesus' name I pray,
Amen

I have not lost hope, but I still cannot believe this is my life.  I keep hoping that I will just wake up, and realize that it's all been a horrible nightmare.  Well, it is a nightmare, but it's my life, not a dream...

I cross my heart......

"Our love is unconditional, we knew it from the start.
I see it in your eyes, you can feel it from my heart.
From here on after let's stay the way we are right now,
And share all the love and laughter
That a lifetime will allow.

I cross my heart and promise to
Give all I've got to give to make all your dreams come true.
In all the world you'll never find a love as true as mine.

You will always be the miracle that makes my life complete,
And as long as there's a breath in me, I'll make yours just as sweet.
As we look into the future, it's as far as we can see,
So let's make each tomorrow be the best that it can be.

I cross my heart and promise to
Give all I've got to give to make all your dreams come true.
In all the world you'll never find a love as true as mine.

And if along the way we find a day it starts to storm,
You've got the promise of my love to keep you warm.
In all the world you'll never find a love as true as mine,
A love as true as mine."

........lyrics to the infamous George Strait song.  This was the first song Pat and I danced to, as a married couple.  Such a beautiful song, and the words ring so true to my heart.  Valentine's Day is only a few days away, and when I thought about it, this song came to mind... 

I have attached a video of this wonderful song...enjoy!

The Plan....

Hello Everyone!

I know it has been a few days since I last posted anything new, so I figured I better give you all an update.

Pat is still in the hospital for right now.  His doctor told us that he looked through the clinical trials, and didn't see any that really fit him.  Another option was to use a different formulation of chemotherapy.  They would be chemotherapy drugs he has been on before, just a different formulation.  He said the chances of this formulation working, is about 15%.  He also said that if Pat would be the 1 in 8 that it does work on, it would only prolong his life for a matter of months, and not years.  So here we were again, faced with "three options":  try these clinical trials (knowing they weren't a good fit), try the different formulation of chemo (knowing there was only a success rate of 15%), or going home on hospice care (knowing that would mean we were giving up).  None of the three options made any sense to us.

Pat's dad, Steve, had heard of some natural ways to treat diseases.  So I did a little research online myself, and looked at these natural remedies.  No drugs, no ill side effects.  There is a tea called Essiac tea.  If you have some free time google it.  It has cured cancer before (and not just once or twice), so it can do it again.  Our decision basically came down to this:  We have no idea what is going to work.  We don't know if this tea will work, we don't know if the trials will work, and we don't know if this new formulation of chemo will work.  So in our eyes, the chances are all about the same.  If he goes to do either the trials, or this chemo, chances are he will be very sick, and it still may not work.  The trials, we would have to travel to another state, away from family and friends here, and have to start over again.  The chemo we would  be able to do here, but we know how sick the chemo makes him.  So it all boiled down to 'quality of life'.  Pat decided that he would rather have a better quality of life, and try this natural approach (which has just as good of a chance working as the other methods), rather than try the other methods, and be sicker than a dog, and have a poor quality of life.

I am just completely disgusted about most doctors views on hospice care.  We were contemplating whether or not to put him in hospice care (in our home, not at a facility) just so if we needed a nurse, we would have one there.  We were NOT contemplating it because we were just going to give up and watch him die.  So I asked the doctor yesterday, "If he goes on hospice care will they be able to administer drugs?"  He told me, "Yes, but only if they are designed to keep him comfortable (I.E. pain killers).  So I asked, "what about anti-biotics"? (The reason I asked is because he is on them now, for an infection, and needs to be on them, or it will eventually kill him.  His doctor told me the other day basically that's what will end up killing him.  Sort of like AIDS.  It's not the disease itself that kills people, it's from their immune systems being so low, they can't fight off infections, and it kills them.)  So the doctor responds, "Well, if the anti-biotics are needed to manage pain, then yes.  So for instance, if he has an infection in his mouth caused from a tooth, then yes, they will administer anti-biotics, because it is causing him pain.  On the other hand, if he has an infection in his bloodstream, and it is causing him no pain, they will not administer anti-biotics."  So today Pat asked if he would still be able to get lab work done, and get blood/platelet transfusions if necessary, the doctor told him this, "No, they will not give blood/platelet transfusions, if you are on hospice care.  Hospice care is NOT designed to prolong your life, it is only there to make you comfortable."  What?!  Are you kidding me?!  So if he goes home on hospice care (which in our eyes, was just as a backup in case something went wrong), they will just let him die, and not try to save him.  Well that's just great!

So needless to say, we will be staying in Montana.  We will need to find a place to stay, as we cannot continue to stay, forever, in this hotel that Pat's Aunt Cindy has graciously let us stay in (We love you Aunt Cindy!!).  Hopefully they will keep him in the hospital until he is well enough to come home.  We will try this more natural approach with open minds, and praying hearts.  We hope it works, and at this point, we have nothing to lose.  I will keep everyone updated as much as I can throughout this process.  I hope to be posting awesome news over the next few months!

Until next time.....

Love
Jen :)

I cannot believe I forgot to mention...

I got so caught up in ranting and raving, and venting about the health care system, that I completely forgot to mention the most important thing that happened today!

Pat was baptized Roman Catholic as a small child, and although I have been a believer for several years, I have never been baptized.  So neither of us had been baptized into the Christian faith, and both of us have wanted to do so for a while.  So TODAY was the big day!  We had the hospital's chaplain come in today, and baptize Pat, myself, and we also dedicated both the boys to the Lord this afternoon.  What a day to remember!  With everything that is going on, I just can't forget how loving Our God truly is, and how amazing His love, and grace is.  It is my faith, and my faith alone that has gotten me to where I am today, and He is bringing US through these struggles and trials.  Although sometimes it is VERY hard to realize, I know He has a plan!  He sees the bigger picture when we cannot.  We are only human, but He is God!

Love
Jen :)

Not the news we wanted to hear...

Well Dr. Santala came in tonight and talked with us briefly about the future, and what it may hold.  Basically he told us that the phase I trials we were putting all our faith in, may not be the way to go.

Let me break down what I have learned about Phase I and Phase II trials.  Phase I trials are designed to test doses of an unknown drug.  For example...Doctors are testing Drug X.  In a Phase I trial, they will take, say 10 participants.  They will start those 10 participants on a very low dose of the drug for a determined amount of time.  Then they will add another 10 participants, the first 10 will stay on that lower dose of Drug X, and the newest group will be given a slightly higher dose.  They will add another 10 participants, the first two groups will stay on their doses, and the newest group will be given a slightly higher dose than the last....so on and so forth, until they find a suitable dose.  When they find what they consider a suitable dose, they will move on to Phase II of the study.  A new group of participants will begin the trials.  They will be given a dose of Drug X equivalent to the highest suitable dose from Phase I.  In Phase II, the doctors will see how well this new Drug X, performs in treating the disease/illness they are studying.

With that being said, Dr. Santala told us that he does not recommend that we follow through with a Phase I study.  He said that it is basically just testing the toxicity of the drug, and not really trying to treat any disease/illness.  He said that a Phase II study would be better.  This news was not the greatest, because if I recall right, many of the studies we were given to choose from, were Phase I studies.  Dr. Santala briefly looked over the paperwork we gave him late last night, but hadn't really researched any of it a whole lot.  He said he would look into them further, but didn't see any that really 'popped' out to him as being a good fit for Pat. 

The other problem Dr Santala brought to our attention is, Pat has multiple diseases.  He doesn't have JUST Chronic Myelogenous Leukemia (CML), and he doesn't have JUST Acute Lymphocytic Leukemia (ALL), and he doesn't have JUST luekemia in his Central Nervous System (CNS), he has all THREE.  Some of the study's focus on only ALL, and some focus on only CML, there was at least one that seemed to focus on both CML, and ALL, BUT, as far as I could tell, there weren't ANY that focused on all three.  He said he thinks the most damaging disease at this point, is probably the ALL, but all three need to be treated, and not just one of the three.

So, again, we wait.  We wait to see what Dr. Santala recommends.  I HATE waiting...it's the worst part of all of this!  

I am just so upset with the health care facilities in Oklahoma.  They were all ready to send us to a Phase I study, without even informing us what it entailed.  We thought it was going to be a good option, but in reality, we had no idea what we would have been getting into.  Like I said in my last post, they sent us packing with a handful of paperwork to decipher ourselves, and offered no support, or help to get through any of this.  I just find it so inconsiderate, and in-compassionate.  These are doctors that deal with terminal illness on a daily basis, I know, but you would think they would be in your corner every step of the way.  Instead they sent us out the door with a few clinical trials in hand, and didn't look back.  It's as if they were saying, 'well the ball is in their court now, to decide what to do next, and it's all off MY shoulders now'.  SOOOO frustrating!

Anyway, that's pretty much the extent of this update.  I appreciate everyone's efforts to get this blog around the world.  If you haven't done so yet, please share this with your friends and family.  It has been viewed from around the globe, and I want to see it to continue to be spread.  The more people that view this blog, the more people that will be praying for a miracle!  So, please, help me get our story heard by the world!  Thanks everyone, and goodnight!

Love
Jen :)

We won't be leaving Montana as soon as we thought...

Well last night I took Pat in to the hospital to be admitted.  He has been running a fairly high temperature the last few days, and it hasn't gone away.  With his white count being almost non-existent, it is very scary when he gets some sort of an infection in his body.

We were supposed to have an appointment with his doctor this morning to discuss his opinion.  We wanted to talk to him about the different trial places we had to choose from, and which one he thought was our best option.  Doctor Santala is an excellent doctor, and he had been treating Pat before we went to Oklahoma.  We trust his opinion, and just wanted to know what he thought we should do.  We also wanted to find out if there were any treatments he could get while we are here, to make his chances (of getting into some of these trials) better.

A few days ago, I read through some of the trials, and to my surprise, he can't even participate in two of the trials, because he fits the 'exclusion' criteria.  One of them he is excluded from because he has an active infection, and is on antibiotics, and the other because he has Leukemia in his CNS (central nervous system).  Wow...we definitely feel like the doctors in Oklahoma not only gave up, but really just don't care.  She just handed us a stack of papers, and said 'be on your way, good luck.'  Not literally of course, but I don't think she even went through any of these trials to see if they were a good fit for him, because if she did, I don't think those two would have even been printed off.  I tried to read through them, and I'm not a doctor, so they are very confusing!  I don't know what level his heart functions at, or what his liver functions at, or his lungs, and every other organ in between....infraction this, bilirubin levels that....I didn't even know where to begin!  So with that all being said, I am glad Dr. Santala is going to look at them, and see if he can make sense out of it all. 

I will keep everyone posted with progress.  They drew some labs last night.  I had them check his ammonia levels (the reason being, his levels were skyrocket a few weeks ago, and that is why he ended up in a coma).  Just wanted to be safe, rather than sorry.  Those levels are normal.  His white blood cell count (wbc) was 0.0 and his platelets were low, so they did give him a couple units of platelets.  Dr. Santala said this morning that they will run some more tests, and cultures.  He hadn't had a chance to look over the trials, but said he would, and would let us know what he thought.  That is really all I know right now.

On a more positive note...the Dinner the other night was great.  It was so nice to see so many familiar faces!  We had a pretty good turnout, and I'm glad Pat got to see how many people are behind him in this fight.  We both even got to see people we haven't seen in years!  Pat was exhausted by the end of the night (as to be expected).  I was exhausted by the end of the night!  All in all though,  it was a good night.  Thanks to everyone who was able to come, and to those who couldn't make it, but let it be known that we were in their thoughts....we appreciate it!

I will give updates as soon as I have them.  Til next time...


Love
Jen :)

Get Together Dinner

Hello again :)  Just wanted to let everyone know we are having a dinner this Saturday (January 29) at the Western Empire Emporium from 5pm until whenever.  I'm sure we will be there for at least a few hours, so feel free to pop in at any time.  It will be a very informal dinner.  If you would like to buy dinner feel free, but don't feel obligated to, if you would like to just come and visit with us, that is fine.  I'm sure Pat would really enjoy to see familiar faces, but if you don't know us, and you can make it, I think he would enjoy hearing that he has support from people he may not even know.  He really needs some positive energy, and to know he has many people supporting him, so I hope to see many of you there!

Love
Jen :)

Safe and Sound

Hello Everyone!

Just wanted to let you all know we have arrived in Billings MT!  My Dad's girlfriend's Son, Jason, was able to get us some buddy passes to fly back home.  We got in around 12:30 last night (monday).  Whew, what a day!  I was up packing and getting stuff ready to go on sunday night, and went to bed around 1 in the morning.  Then we were back up at about 4:30 am, and left the house a little before 6 am.  We drove to the Dallas airport (about 3 hours) and boarded the plane at about 1:30 pm.  We flew to Seattle, arrived around 4pm, and got to see my Aunt, and two cousins, which was awesome!  So glad they all came up to the airport to visit with us!  We boarded the plane at about 8:30 pm, then flew to Bozeman, where we had to drop a few people off (due to another flight being canceled), and continued on to Billings.  We were all so exhausted by the end of the trip!  Pat did ok, but it definitely took a lot out of him to be 'on the go' for that long.

It feels so good to be back home!  We have already seen a few faces that we have missed!  We are trying to plan a get together dinner, so we can see more people at once, since we are only here for about a week.  So although it will be a draining night, it will be so good to see so many familiar, and supportive faces :)

Oh, and just to clarify to everyone...we are not moving back to Montana, yet.  We are just here to visit for about a week.  Then we will head back to Oklahoma City.  Once we figure out which trial we are going to try, we will pack up all of our stuff (again) and move to another state (again).

I want to thank all that have shared this blog with your friends!  There are people out there helping us out that we don't even know!  How awesome is that?!  So keep it up everyone :) 

Well I better get to bed...long week in front of me :)  Til next time...

Love
Jen :)

Trip to Montana

Hello everyone!

Well, we are have a trip planned to come back home.  We are set to leave tomorrow.  My dad and his girlfriend were able to get us some buddy passes, the only downfall is that they are 'standby' tickets.  So, we are driving to Dallas tomorrow morning, and hopefully we will be able to get on the first plane that leaves at 1:40 pm.  The problem with flying standby, for those of you who don't know (because I had no clue!) is if the plane fills up, then we lose our spot on that flight, and have to wait for the next one, so on and so forth...
So if everything goes smoothly, we will board the plane at 1:40, and we have a layover in Seattle (and we are on standby in Seattle as well) then we will fly through to Billings.  I believe if we make the first flights in both cities, we will be in billings around midnight on Monday (tomorrow).  So everyone please pray that we get on those flights, not because it will be an inconvenience to be stuck at the airport, but because Pat is very weak, and is not going to do well stuck at the airport. 

As far as when we arrive in Billings, we would like to see so many people, and there is going to be so little time!  We were thinking about trying to coordinate a casual, low-key dinner or something, so we would be able to see many people at the same time.  Similar to the fundraiser dinner we had before we left, but not necessarily with a fundraiser portion.  If anyone has any thoughts or ideas, or would like to help coordinate it, please contact me!  We can't wait to see so many of you!!

I would just like to say thank you to my Dad, Leah, and Pat's parents, Steve and Kathy for doing everything necessary to make this trip happen for us!  We love all of you!  Thank you!

I would also like to say thank you to those of you that have donated to our cause thus far!  We truly appreciate everyone's efforts!  Thank you!

Well I better get busy packing and such!  It is going to be a really long day tomorrow! 

Love
Jen :)

PS.  It's so great to see so many people following this blog already!  It warms my heart to know you all care so much!  Please feel free to share this blog with all your friends and family!

First Blog Post

Hi Everyone!  Thanks for stopping by!  Just to let all you Montana folks know...we are planning a trip to Billings.  Pat would like to see his friends and family before we head out on this next journey. Hopefully we will be able to come next week, it's just going to depend on if we can get enough finances together etc.  We hope to see many of you!  I am still learning about all of this blog stuff, so everyone will just have to bear with me! :)  Talk to you all soon!

Love
Jen :)