I am afraid to go to sleep.....

Well nothing too drastic has changed since my last post.  They have upped his pain medication a few times today.  He has a PCA pump, so he is on a continuous drip of dilaudid, but also can push the button every 15 minutes to administer a boost to himself.  His pain levels were much better today.

His family and I talked to the doctors today, and came to the consensus that we will just let this disease take it's course.  He will not be put on any form of life support, or be resuscitated if he were to stop breathing.  He doesn't need to be in pain, or continue to suffer.  And although Pat wouldn't give us all a black and white answer, I feel like this is what he wants.  Although I feel like we all made the right choice, it does not make it any easier.  It's a pretty tough pill to swallow.

I had to tell my husband today, that although I don't want him to go, I understand that if he is tired, he can.  I had to tell him, it was 'ok'.  Even though on the inside, I am not 'ok', and don't feel like I am going to ever be 'ok'.  My life will never be the same again.  I know people say that it gets easier with time, but right now, that's impossible for me to envision.

There is a man we met a few months back.  His name is Tom.  We had a going away/fundraiser dinner before we left to go to Oklahoma, and we met him that night.  His wife was also going through cancer at the time, and was in another city getting treatments, while he was here, working.  When we came back a few weeks ago, and had the get together dinner, he just happened to be there.  In the time we were gone, he had lost his wife.  When I heard this, my heart ached for the man.  I hardly knew him, yet I wept for his sadness.  I could see it in his bright blue eyes.  I knew it was a possibility I would be in his shoes one day.  Yet I did not want to believe it would be this soon. 

I am afraid to go to sleep tonight, because I am afraid when I wake up, he will not be here...

The bad news keeps getting worse....

Well I cannot even seem to form words today.  My body feels completely numb.  My heart is breaking in two.  I keep thinking my body is out of tears, but no, they just keep flowing.

My husband's situation has gone from bad to worse.  The infection has spread to his lungs.  It is over-taking his entire body, and they are doubtful that he will pull through this.  He is in excruciating pain, and his coughing is getting worse.  They have upped the dose of his pain medication, but they also worry that it could inhibit his breathing to the point of it stopping completely.  If that were to happen, they don't think he would survive the trauma of being intubated (being put on a ventilator), or being resuscitated.  As it stands right now, they will do limited CPR, but will not intubate him.  

These blog posts just keep getting harder, and harder to write.  I actually have to go back and read again, and again what I am writing.  I have to keep asking myself, "Is this real?  Am I really blogging about my husband possibly passing away?"  The unfortunate answer is, yes.  This is my life.  It's not a dream.

I am constantly reminded of all the things we looked forward to.  Now he may not be there to share them with me, and it's absolutely killing me.  Valentine's Day is just around the corner, and I hope I am able to share that day with him, but I know, it's a possibility that I may not.  Our anniversary is a little over a month away, and we may not even get to celebrate it together.  I look into my little boy's eyes, and I feel so blessed that I am his mommy, and that Pat is his daddy.  Yet with every look I am also reminded that his daddy may not be here to see all his milestones.  He may not get to hear his first real laugh.  He may not get to hear those first words, or watch him take his first steps.  It is absolutely heart-breaking.

I am so afraid to be alone.  It's just not fair.  I finally found that one person, in the whole entire world, that I want to spend the rest of my life with, and now he may be taken from me.  I hate it.  I hate cancer.

I feel so selfish.  I know if he passes away, he will be in a much better place.  He will be in heaven, with Jesus, and our Heavenly Father.  He will be in a place where there is no pain, no suffering, and no tears of sadness.  Yet I want him to stay here, with me, with our family.

For those of you that know Pat personally, I would encourage you to come see him.  You may not get the chance to again.  For those of you that don't know him,  I wish you did.  He is the most amazing person I have ever met.  He has the hugest heart, and is so strong, and courageous.  He has put up one heck of a fight, and I know he is tired.

I am begging you, please pray for my husband.  Please share this blog with anyone and everyone you know, and encourage them to do the same.  Maybe if God hears all of our cries, he will save my husband.   I still am hoping for that miracle....

I won't let go......

It's like a storm
That cuts a path
It's breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont

....................lyrics to 'I won't let go' by Rascal Flatts.  It's what my heart is singing tonight......

Video posted below.....

I am posting another update in just a few minutes, so please check that out.

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 :)