Monday, November 30, 2015

Outtakes

Sunday, I asked Shelbie to take a picture of Spencer and I.  It took nearly a dozen tries to get something remotely decent.  His eyes were closed, mine were closed, someone wasn't looking.  We never did end up with a picture that I was happy about or that I could successfully layer on the anti aging filters, make the lighting more agreeable, whiten my teeth; you know, make the picture look just a little more than perfect.

So, we end up with goofy smiles, harsh lighting, just an all round silly picture.

An outtake.  A do over...Try again.

Today has been one of those outtakes.  A collection of things I wish we could just do over.  Scrap the day and try again.

Today, Spencer drove nearly all the way back from Utah after just driving back there yesterday, so he could attend an appointment with our new Hematologist. He would have just spent the night but he had a job interview in Salt Lake this morning and this doctor appointment in Pocatello this afternoon.

I have invested my heart and soul into this new doctor.  I am so desperate for help.  My hopes were high.  By all accounts of our experience before meeting the doctor, it held a lot of promise.  The nurses were stellar and personable.  They were efficient and friendly and interested in Spencer.   The hospital was new, the clinic clean and peaceful.

The doctor came in and right away, I knew we were in trouble.  After doing this for 23 years, I have a feel for doctors.  He came in the room, no introductions and didn't even ask who we were.  He had obviously done his DC homework because he started right in with facts and cancer figures, telomere length studies and most of the other important details.  He kept rambling on and only after 10 minutes, asked why were there.  Not once in the 75 minute meeting did he refer to Spencer as anything but 'the boy'.  He spoke in third person like we were discussing a dog that wasn't in the room.

At some point, I probably checked out.  He kept asking the same question a dozen different ways and who knows what I was saying but communication wasn't happening.  Finally, Shelbie just put her hand up and said something...I don't even know what she said.  I was already frustrated, beaten down and bewildered.  I felt stupid, unprepared and like I had no clue what was happening to my kids.

Doctors always seem to come into these new appointments with and extra amount of intellectual confidence, intimidation and inflated egos.  They always seem to have a point to prove like they are God or something.  He was definitely smart but what is the point to that if they can't communicate or listen?  About halfway through, they realize that they have no idea what they are talking about, that they are dealing with an overwhelming situation and then we are just left with an ego and any kind of blame they can put on me to make them look better.

That's exactly what happened as the dreadful appointment went on. I can tell I'm wearing down because I could seriously picture myself storming out there in the biggest hissy fit known to mankind with guns blazing...(figuratively speaking of course)  Instead, I just sat there trying to keep myself from having a stroke and an out of body experience.

He said, "How am I suppose to take care of these kids when there are no standards of care?  If they had a risk of breast cancer, the cancer association has clearly outlined what the screening consists of and what you do when a person gets breast cancer.  With this there are no standards.  It's all hypothetical.  Some doctor or two call themselves experts in DC and they call the shots.  It's really hard to do my job under those circumstances."

What do you say to that?  Really.  Welcome to my world of orphan disease.  It's kind of hard to do my job too when doctors only want the easy cases.  The cases where there are a million or more studies and they don't have to research or look any farther than Web MD to know how to care for their patients.  We have no standards either.  It's a mess.  We constantly live in a mess.

We finally left without any answers.  The fact that Spencer is STILL sick and just finished another two weeks of antibiotics was not an important fact to him.  Toxic neutrophils were not important to him or the monocytosis or the abnormal lymphocytes.  The boy has not one normal blood cell to which he agreed and also acknowledged that the fact Spencer has never had a fever through all this is proof that his white cells are shot!  Not doing anything.

I got an earful from Shelbie and Spencer when we got to the car.  They were frustrated but not in an angry way...worse...sarcasm and humor which almost always hurts more than anger.  Spencer said, "I have an idea if anyone cares to hear what the boy thinks...let's just get a head start on Hospice so that they can at least keep me comfortable."

Shelbie actually was pretty upset.  It's just so sad that these kids really feel like they are dying and no one can give them one bit of hope that they are going to be okay.   The truth is, I don't think we will ever need a hematologist.  Even if we are faced with Myelodysplasia, leukemia or aplastic anemia my kids are no longer eligible for a bone marrow transplant.  They don't have good enough heart or lung function to allow them to survive the chemotherapy regimens needed prior to transplant.  So, maybe we are just wasting time and resources.

One thing they both verbalized was that they tell doctors over and over about a symptom they are having and the doctor says things like, "Well, you look good enough."  or "The CBC is fine."  They completely discount what they are feeling and gloss over it.

It was a rough day.  We need a do over.   I'm just not sure what the do over would consist of.  I have a kid still sick with Salmonella, a kid with lesions of some sort all over the front of her brain and a kid barely hanging in there.

All the way home from Pocatello, I was thinking about something our surgeon friend told me when he and his wife came up to the hospital earlier this month to visit Spencer.  He said, "Ya know Kath, you can run as fast as you can but at some point, this disease is going to outrun you.  Then what?  How are you going to handle that?  What is your plan?  You need to be able to let go."

Maybe it's time to stop running.  I don't know.  At some point, maybe trying to get answers does more harm than good.  Aren't we hard wired to fight? Some days, I feel like we are being held in contempt by this stupid disease.  I don't have any answers tonight.  I feel completely let down.  Everyone seems to move on from our problems so easily and quickly but we haven't moved on.  We stay stuck and I just don't know how to get unstuck tonight.
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Sunday, November 29, 2015

Thanksgiving

Another week of gratitude wrapping up.  The end of the week seemed bring with it a bit of a respite from hospitals, illness, discomfort and even the emotional roller coaster came to a halt long enough to catch my breath.

I had every intention of simplifying the holiday but that dream was nothing close to the reality that transpired.  This was Spencer's first Thanksgiving with us in two years and it was also my Wasband's nephew's first Thanksgiving since he got home from his mission, so it just got bigger than anticipated.  Part of it was that I was home alone the night before Thanksgiving.  The kids went over to their dad's and spent the night.  The quiet and aloneness wasn't terribly fun so I just kept cooking and baking until about 1 am, it all got out of hand.  It's also a holiday miracle because food hasn't been my priority since Spencer got sick.  The whole Salmonella thing just messed with my head.  So, I did a lot of hard things with food in 24 hours, made everything except the Nutella from scratch, nothing processed!  Yay me!

We had a brunch at 11 which consisted of crepes, a variety of fresh fruits, Nutella, Whipped Cream, veggie trays, fresh spinach artichoke dip, cheese and crackers...the list goes on and grazing happened until dinner at 5.

I know some people complain about Thanksgiving getting lost with Christmas coming too soon but I think Thanksgiving is the holiday that kicks off Christmas.  It's a great way to start the Christmas season with gratitude for our Saviour, so, I always have the house decorated for Thanksgiving. Decorations are pretty simple since my house is so tiny but it's just enough.



Christmas tree and mantel

Nativity

My favorite thing for the holidays is a poinsettia in a glass vase.  There is something about seeing the dirt, the roots...I love! 

Brunch- this is only one counter full of food.  My Wasband and his nephew joined us and it made for a good day.  We also had our neighbors over for brunch since they had to stay home at the last minute due to weather, so, it was a good crowd of mouths to feed. 

Sleigh Ride.  The kids and I went out to a ranch that was offering free sleigh rides with some canned food donations.  It was freezing but so peaceful to be with my kids.
 
It was a good few days together as a family.  Shelbie had so many photo shoots prior to Thanksgiving, she was pretty exhausted and by Saturday her blood pressure was crazy and her heart rate even stranger so she struggled.  Spencer wanted to go to the mall Saturday, so we had to rent a wheelchair for Shelbie.  I hate that but it's becoming more common.   I even thought I should probably just buy one because it happens so much.  Spencer kept asking if they could switch because he is still pretty weak.  Sometimes, I just laugh at how crazy things can get but, it's life.

All in all, we survived and it was good.


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Wednesday, November 25, 2015

With Gratitude

Happy Thanksgiving.

It's been a month of tribulation; trials I couldn't even see coming.  Tests that seem unbelievable and beyond what I ever thought my limits of testing could be.  Yet, in all of that, I can't deny that we are blessed.  Beyond measure.

Three months ago, I signed up for a class on Taxonomies.  Taxonomies are tiny sketches of collections.  Every year, I try to take at least one or two classes.  One of the classes is usually a self enhancement kind of class like something from Brene Brown on the Gifts of Imperfection.  This year, I did Arianna Huffington's class on her book Thrive.  I typically wouldn't describe myself as a person who thrives...mostly survives.  It was a deep class, learning to thrive is going to be a process for me.

The second class is usually something in the arena of writing or something creative.  This year, I have been interested in art journaling, hand lettering, sketching...so this taxonomy class seemed like a simple place to start.  These are quick, rough, very rough sketches of my list of Blessings; a short smattering of what I am thankful for today.

1.  My kids.  They are the reason I do what I do.  They are the reason I bother to get out of bed everyday.  They are the reason for everything.  They are my greatest treasure in life.  They are my joy, my happy place, my tears, my love, they keep the rhythm of my heart. Every decision, every act, every hope is with them in the front of my mind.

 2. Another Day.  It has become apparent, this year, more than any other year that there are no promises held for tomorrow.  Only today.  Today is one more day I am blessed to have my kids in my life, in this life.  At the end of the day, we are settled in finding the little things to be happy about.  Sometimes, it's just that we made it through the day, white knuckles and all but we made it through together.
 3. Family.  I am grateful that my family hangs in there with me.  I am a terrible communicator.  I don't call as often as I should.  I keep them at arms length most of the time because I don't want them to be weighed down by the drama of our life. It's hard when my life seems stuck and theirs is moving onward.  It's hard for all of us.  I know they struggle to share their good news as much as I struggle to share my bad.  I know this has caused them heartache and hurt. I know I could be better at sharing my life with them. I love them.  I remember my parents having to drag information from me when I was younger.  I just keep it all inside.  Nothing much has changed.  I know it's frustrating to have a kid like me because I have a kid like me!  But, when the rubber meets the road, they are there.  We are there for each other, our flaws, our shortcomings, our big hearts!  Our big hearts show up...always!   In every possible way.  We aren't perfect but we stick together.  We get each other through the hard times and there has been no shortage of hard times for all of us this year!
4. My Soft Place To Land.  I have spent a lot of time on this couch in the past.  It's my soft place to land once a week.  It's the place I go to set down my luggage of life, the burdens I shoulder.  I unpack for an hour or so, take a look at all the troubles I've collected and in that short time, my story is witnessed.  It's real.  Being a single mom is hard.  I don't have the luxury of a bad day.  I can't be a mess of emotions in front of my kids.  I not only set the tone for the day but for their life.  My attitude determines their attitude. They count on me to be strong, settled, happy, confident and hopeful.  It is hard. Some days, I feel like I should get a Tony award for my stellar performance! At the end of the day, there isn't anyone I can turn to to decompress, share a worry or two; it's just me.  All the time.  I'm blessed to have a doctor who just lets me be real.  Lately, a real mess.  He truly has the most compassionate heart.  There were three good years he kept me alive in a literal sense.  I owe him so much.  Without a doubt, he was chosen by my loving Father in Heaven to help me get through these hard things. 
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5.  Friends I've never met.  I have never been one to have a lot of friends, even growing up.  I have discovered the blessings that can come from friends I have never met.  It's just a handful, but these women pray endlessly for my kids and myself.  I pray for theirs as well.  When I say I'm tired, they know that kind of tired.  They never cease to amaze me.  I don't even really know how we met, it just seemed to happen and they are a blessing.

 6.  The kindness of strangers.  The world seems like such a crazy, mixed up mess, filled with tragedy we bring on ourselves.  I'm always amazed when I witness the kindness of strangers, either to me or to someone around me.  There is no shortage.  Lately, the strangers have come once hearing the story of Spencer this month.  Spencer and I have received some of the most beautiful letters of hope from several families he served in his mission.  It amazes me that they would take the time to write us.  They are little postcards from Heaven we hold close to our hearts.  Their reaching is felt.  They make me want to be better and share more empathy and compassion.
 7.  Losing our troubles in service.  We would be in a sad state of affairs if it wasn't for the lessons I learned early in life to serve.  There was never a Christmas that focused on getting.  It was always about giving.  The one thing I will always appreciate about my family life and never forget is the feeling of love and peace I had when I saw my dad give a stranger some money, or dropping boxes of presents off for people who had less than us and my mom baking endlessly for neighbors, sick people, sad people, needy people. The list is long of lessons I learned on service.  It has been the one thing that has saved my kids and myself from a life of feeling sorry for ourselves.  I use it as a tool to keep them on track spiritually, physically and mentally.  You can not have a bitter, hard heart if you are doing something for others, no matter how hard your own life is.  I want them to be weary in well doing, not weary in doing only for themselves.   Yesterday, the boys and I went to help our homeless friend try to get her car started.  I know Spencer wasn't feeling well and Sam could have been doing a million other things but they were happy to help.  They went the extra mile for her.  Life was good yesterday.  Service is the law of abundance in action.
 8.  Defining Moments.  Life has been hard but it is in those hard moments, when we can not do one thing for ourselves, that we have come to know the grace and mercy of a loving Father in Heaven.  Its in the trials where we really meet our maker.  When we receive with gratitude His good gifts.  His kindness and understanding.  There is so much holiness in the moments that define us.
 9. Testimony.  I am blessed to have  testimony of the Gospel of Jesus Christ.  I know that in the end, everything will work out.  I know that God hasn't brought us this far to drop us now.  I am grateful for this knowledge I have and the understanding that this life, is the time to prepare to meet God. I'm learning to view life with my spiritual eyes, more than with my mortal, short sighted vision.  It is the gospel that keeps me moving and when I hear the words of the prophet, I am strengthened.  I know that prayer changes things.  I have so many friends each representing different religions.  It makes no difference to me what religion a person chooses to practice, it is prayer that binds us together, its the spirit and spirituality that makes us one.  It's a combined faith and belief in God that matters to me.
So, I could go on but this is a good start.  I am blessed.  We are blessed.  We have a shortage of so many things in terms of the worldly goods and health but even still, we are so blessed; in amazing ways.  You don't have to look far to see others with so many more hardships and trials.  It makes me feel guilty at times that we are doing so well.

Happy Thanksgiving.  I hope it is a reflective and peaceful day of gratitude.

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Tuesday, November 24, 2015

The unexpected

Today was so completely unexpected.

It started out okay.  Shelbie seemed to be doing better.  She was not in pain and so decided to head to Idaho Falls to get some fabric for a photo shoot she has tomorrow. I had a doctor's appointment and a couple of houses to clean.

At about 12:30, I got a frantic call from her that something was happening to her head.  Her eyes weren't tracking, she was foggy and said she felt like she was going to have a seizure.  I suggested that she grab a candy bar and see if getting some sugar in her system would help.  She has a history of low sugar that can make her feel weak and shaky.  I wasn't sure this was the problem but I didn't know what else to tell her.

About 15 minutes later, she called back and had lost vision in her right eye.  Still having a hard time tracking with her eyes, she had pain and tingling in her right arm and couldn't make sense of words.  She could see them but couldn't figure out what they said.  I was pretty nervous. My mom had a stroke a few months ago so I was a little extra worried.  I left right away and dashed down to Idaho Falls.  It's a 35 minute drive to where she was.  Another 15 minutes after I left, she called back crying and upset but her vision was back and she was getting feeling back in her arm.  Some people nearby had seen her crying and offered to stay with her.  They also shared their leftover Chick Fil A fries with her.  They were very nice people!

My first thought was that she had had a stroke.  Anyways, I got to her and I brought her back to the ER.   The ER was slammed!  I couldn't believe the number of people in the middle of the afternoon.  We got the last room.  When we finally saw the doctor, his thought was a stroke as well or a complex migraine that came on in a strange way.  The interesting thing is, it passed relatively fast and she never really experienced headache pain.

They did an MRI around 5 tonight.  It seemed impossible to me that she could have anything wrong with her brain and I kind of thought they wouldn't find any bleed.  He said unless she had a massive bleed, they may not know.  Even if a blood clot traveled through the hole in her heart and to her head, it was probably long gone.

I had a presentation at 5pm in another small town close by.  It was the first time I have ever chosen my job over my kids.  I had interviewed for this big project twice and was hired over three other designers.  I had already cancelled our presentation twice due to Spencer's issues two weeks ago, so I didn't feel like I could cancel again.  My Wasband was able to come up and sit with her while I ran to my presentation.  It sucked...my presentation was okay but I was so torn and couldn't even concentrate on the project.

I got back just as she was getting back from the MRI.

They didn't find a clot but they found several 'spots' or 'lesions' on her brain.

I can't even believe it!  The radiologist wasn't exactly sure what they were.  I have a feeling that they are AVM's.   When we met with the cardiologist in Utah back in October, he said that by the time the venous malformations show up in the lungs, they are probably already in the liver, which is usually where they start, then spread to the lungs.  The next place they spread to is the brain.

Earlier this year, they accidentally found all the "Non specific spots" on her lungs and said it was nothing.  Upon closer inspection from our pulmonologist, they discovered they were holes from the AVM's.

Ahhh...we left the ER with a CD of the MRI.  I will be on the phone tomorrow with NIH (National Institute of Health) where they are working on some research for us.  They are currently doing studies on AVM's and dyskeratosis congenita.

The ER doc who recently moved here from the U of U said, that if they are AVM's in her brain, they could create an aneurysm which is the big risk with brain AVM's.  We aren't sure if these spots are what created the neurological event today.

I'm trying to understand what is happening to us.  I remember on our last visit to Seattle to meet with the doctor who found the gene, tell me that she expected Sam had a few more good years left.  She said that most of the complications with the disease come in the third decade of life, between the 20's and 30's.  I believe we have arrived at this point with Shelbie and Spencer.

Spencer arrived home during all this chaos and met us up at the hospital.  He seemed a little distraught.  He had a pretty rough day himself.  Tonight, we are all together, the kids in their element with each other.  Shelbie is feeling better.  She is worried but I'm pretty sure it hasn't exactly started to sink in yet.   The distraction she has with her brothers is good.

I'm rambling now...but I really need to work on seeing my kids as anything but normal.  I think this is so hard because I like to believe we are normal.  For all of this to be happening to a completely, normal, healthy family is insanity!  The fact that this is all happening to a family with a fatal genetic disease is entirely normal, even expected.

It's all just hard and unexpected.


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The taste of sadness

"She refused to taste sadness, even when that was the only thing she had left to eat." i.k.

What a beautiful string of words!

Today, I promised to write a post about someone else's life...because I'm sick of mine.

Yesterday, just as it has been for the past four days, was hard.  I'm just caught up in this very strange and useless place of feeling too much or nothing at all.

So...last night, in an effort to get it together for this week of Thanksgiving, we rallied.  It really should be a week we realize and express gratitude for our rich blessings.  There is always something to be thankful for.


Sam and I put together some blessing bags of treats for my visiting teaching sisters and some of the people in my life going through difficult things.  Shelbie is still pretty sick but there's nothing like a little fresh air to help the spirit so we packed her in the car too.

I could feel the sting of this month subside as Sam and I visited with my friend whose husband passed away two weeks ago while I was there cleaning.  Sam loves these people and they treat him like he is the best thing in the world and in return, he enjoys helping them with things around the house.  She was having fun with Sam last night and put him to task on something for the next couple of days.  I love seeing Sam's eyes light up with the opportunities to serve.

The last place we went was to our homeless friend May.  Technically, she has been in her apartment for almost a full year!  I am so proud of her and so happy that she has chosen to stay there instead of living in her car like she has done for decades!  It's nice to have her close by.  Before, she was always on the road and I couldn't see her as often as I wanted to. Shelbie came up with us to drop off the treats but Sam had to hold her up all the way to the third floor of the building.

As May opened her door, there in the tiny kitchen was her tricycle.  It was filled with her stuff, just like every corner of her room is. She apologized for the snow and mud dripping from the tires and explained that her van broke down two weeks ago, so she resorted to riding this tricycle to get groceries and go to the library...which also broke down yesterday!  The frame fell apart so she pushed it to a shop to get welded.

In her telling of these stories, there was not one ounce of complaint. Not one ounce of upset, sadness, aggravation, frustration.  She was happy.  She is alone, not a stitch of family and no friends to speak of except when we visit.  She is aging and achy.  She has very little food but she is thrilled to have a can of sardines she found on sale at the dollar store. She can go into great detail about how delicious her meager meal was.  She has more reasons than anyone I know of, to be sad...

But- "She refused to taste sadness, even when that was the only thing she had left to eat."

I wish I could be more like her.  I wish that when my car broke down, I would cheerfully jump on my old bike, even in the dead of winter to grab some sardines from the dollar store and savor them with a healthy dash of gratitude, yet, at times, it seems sadness is all I taste.  Sadness is served up like a buffet without noticing that there are other choices to make, things to taste besides that bitter serving of all you can eat...should you choose.


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Monday, November 23, 2015

Anymore

Anymore, my life is ridiculous.

I am a big fan of the concept of 'owning your story'...  until, you realize your story isn't even believable by yourself, let alone anybody else.

Anymore, I don't want to own my story.

Anymore, I wish I had a different story to tell.

I think tomorrow, I will tell a story from someone else's life or some made up life.  Maybe I will tell the story of what tomorrow was suppose to look like when I thought about tomorrow, back when I was all of 6 years old or something.

Today's story is about another trip to the hospital.  This time at 4:something AM.

 I don't even sleep anymore.  I just lay in bed like normal people do, so I look like I'm sleeping, but really I'm just waiting for someone to have an emergency that needs immediate attention.  It's working out pretty well.  It's much better than being woken from a dead sleep and having adrenaline  shock your heart into an arrhythmia that lasts until the next emergency or the next time I doze off.   I think the only thing I will change is just sleeping with my clothes on.  It's a bit of burden to have to get dressed at 4 in the morning.

I'm not entirely sure why I feel the need to keep silver lining things, I guess it's just a bad habit I picked up somewhere along the way.  But, Spencer reports some slight improvements.  Nothing earth shattering but slight is better than nothing.  I asked him if he felt as good as his crummy self prior to Salmonella and he said no, not that good yet!  How sad, we just want to feel as bad as we use to.

Well, that's life in the fast lane of Dyskeratosis Congenita...Sometimes, it's like I'm watching the scaffolding on a building just crumble and fall like dominoes.  November has been a dominoes kind of month.


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Friday, November 20, 2015

Settling

Some days,  it feels like I have been waiting my whole life for things to work out.  Just one little thing to work out or be easy; easier than it has been.  But, it has never been easy and it never gets better.  Instead...I learn to settle.
A view from our hospital stay this week.  Sometimes, we sit in the room where families wait for their loved ones to pass on.  It's quiet and surrounded by windows.  Sometimes, I just sit here in the dark.  Alone.  A moment of peace amidst the chaos


 Last Christmas, they found a hole in Samuel's heart.  The pressure in his lungs was incredibly, abnormally high.  I fretted and cried for days about a hole in his heart.  As the testing went on, it became clear that maybe the hole wasn't the biggest problem. I begged and pleaded for the hole in the heart.  I would have given anything for the hole in the heart to be the biggest problem. There were bigger problems like multiple holes in his lungs.   Living with the thought of my son having holes in his lungs was nearly more than I could bear. Back then, I couldn't imagine how we would ever get through it.  I didn't imagine that I would even have the rest of the year with him. Here we are, a full year later.  But, it will never, ever just be a hole in his heart ever again...so we settled.

I can't even count the times I said with Shelbie...Please, no more chemotherapy...Okay...I guess we can do more...and more we did.  And here we are...still finding a way to get up everyday and make something great happen.  She settles for a poor heart, weak blood pressure and holes in her lungs and heart.

Here we go again...settling.

A month ago, I begged for anything but E Coli. I got what I wanted...We settled for Salmonella instead. So, I accepted that fact and held on to logic that it couldn't last forever.  24 days later,19 days beyond the average duration of the bacterial infection, I'm guessing we will be settling for chronic Salmonella instead of acute.

Worse than me settling...Spencer settles.  He settles for who knows how many more days, weeks, months of losing weight, chronic pain, GI bleeding...At some point, you can't just lay around waiting to get better.  At some point, you settle on the fact that life goes on no matter how you feel.

I guess we are at that point.  Spencer has been applying for easy, low energy jobs. That was never the plan.  The plan was that he would get better and then he would go back to his other job.  He doesn't have the strength to do his old job.  He has an interview on Monday.  He'll probably get it.  It's at a ski hill running a chair lift.  A button pusher.  That's all.  I guess I shouldn't complain.  He settles for a job that takes no skill but he will be happy.  He always finds a way to be happy.  He, like the rest of us, settle for what is, not what we hoped for it to be.  It's never anything we hoped for.  I never hoped for a disease that would distort a normal life, let alone settle our dreams into something I hardly recognize.  I never dreamed that I would watch my kids struggle every single day but that is what we have settled into.

Always settling.




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Wednesday, November 18, 2015

All on a Wednesday

Today was a day I wasn't expecting.

A little back story...last night, as we had family prayer, I expressed gratitude for Sam's good health the past few months.  When I was done Sam said, "MOM!  I thought you loved me!  Why did you have mention how good I have been?  You just jinxed me!"

"No I didn't Sam.  You are going to be fine."
Well this morning...not fine.

He woke up with a mouthful of sores.  It happens when his white count/neutrophils tank.  I'm guessing his white count is probably close to 1.  Maybe 1.5.  Low.  I numbed him up and sent him to school.

I had a busy morning with a big conference call for a hospital design project I am doing in Star Valley Wyoming.  I was suppose to be there but with everything going on, it just wasn't possible so they graciously allowed me to conference call them.

While I was on that call, Sam kept trying to call me.  He called about three times and sent a few text messages.  I had a very hard time trying to focus on the conversation knowing that something was wrong with Sam. He never calls in the middle of the morning unless something is wrong.  About 15 minutes later, he walked in the door.

He had lost half of his vision at school. I was not expecting that.  It hasn't happened in a few months so I kind of stopped worrying about it.  Just after I got him medicated and back to school, I had a doctor's appointment.

I found a lump in my breast two weeks ago.  I don't have any time at all for cancer.  It's just not something I'm into.  So, today, I met with the surgeon.  He agreed that it was not right and needed to come out.  We had planned to do the surgery on Friday.

At 3:45, I got a call that things had to change in the schedule and he wanted to do the surgery today.   I called Sam so he could drive me because Shelbie was working.  He had lost his keys so that took a minute or two to track those down but by some miracle, we got there in time.

Here's the kicker...it was going to happen in his office.  I just didn't want to pay to be put under nor did I have time to spend the day in the hospital and he assured me that it would be pretty easy.  That's all well and good but I was so nervous!!  I'm not a huge fan of pain...or cancer.

So, things got underway and clearly, it was more detailed than expected.  It lasted almost two hours. There wasn't just one.  He found 4 (I think...I kind of lost count when we found out there wasn't just the one I found!)  tumors that he removed and he did an aspirate biopsy on 4 others. It didn't take long for me to have second thoughts about doing this wide awake!  It was hard!  And it was painful!  But it's done.  My surgeon is amazing and he and his nurse were so good to keep a conversation going in hopes of distracting me.  Even still, I wouldn't recommend having a lumpectomy wide awake.  It was just hard.  There were some vessels that wouldn't stop bleeding and it took a lot of cauterizing.  It was not fun.  Tonight, I am in so much pain.  I suppose tomorrow will be worse.

Okay, well enough of that.  Now we wait for pathology.  Sam is feeling better; well, his vision came back.  Shelbie is sick and has even more petechiae than yesterday. Her blood pressure is low and she is having a hard time catching her breath and nausea.  She's hardly eaten in three days. This is the third time this year, her platelets have dropped before her transfusion.  I feel like her ITP is back.  I just hope and pray that the transfusions will buy us some time and we can avoid chemotherapy but, what will be will be.  Tomorrow will be our marathon day at the hospital for her transfusion.  12 hours! Ugh.

Spencer is status quo.  No changes. Not one bit better.  Each day that passes without improvement just worries me.

And that's a wrap for this Wednesday...what a pain!  Literally!


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Tuesday, November 17, 2015

The Stages of Grief


I'm not sure who to give credit to on this little diagram but I believe, they should receive some Nobel Peace Prize or something of that nature!  This is shear genius!  Finally, someone actually came up with a picture to illustrate most of what is happening in my head on any given day!  

    This diagram should be taught in every Institution offering any medical related class.  It should be hung, larger than life from the rafters.  No one should be able to practice medicine until they understand this concept.  
  
     If doctors understood how the stages of grief really work...they wouldn't have to medicate patients until they can no longer feel their toes.  They would see that their bipolar, extreme thought patterns, racing mind, disconnected thoughts, word finding problems, are completely normal under the circumstances and are natural brain patterns for chronic caregivers...or caregivers for the chronic...either way works.

    This diagram also saves me a whole lot of time and energy spent in trying to appear completely normal.  I will no longer tell myself I am nuttier than a fruitcake, poster child for mental illness, crazy or that Alzheimer's is setting in prematurely.  I mean, look at this illustration; is it any wonder I get lost in my thoughts?
I can see now, how I have a hard time remembering my dad's name.  It's there, my brain is just trying to retrieve it from bouncing between 'emotional outbursts' and 'isolation'.  

    This is such a huge relief to me!  I thought I was losing my mind but it's all there!  It's just organized a little differently than yours or how it was before...before I had kids...before when I was normal...or something resembling normal.  It's a little more of a freestyle pattern of storing information rather than the boring arc where you move from one expected, blah feeling to the next; it has no surprises!!  You know what feeling is coming next and you have ample time to prepare for it, especially if you are ready to move on from where you are stuck.   And that begs the question....

      Where.  Is.  The.  Fun.  In.  That?



   So, tomorrow is going to be a lot better now that I am armed with this information.  I will stop trying to numb myself with boxes of Swedish Fish and Dark Lindor Truffles.  I am going to stop volunteering to fill up all my friend's cars with gas just so I can linger a little longer with the fumes from the gas pump.  I don't want to kill one brain cell working so hard for me! I will also retire my collection of permanent markers and  poster making hobby.  I am going to embrace this new way of thinking!  I will remain engaged as I excitedly experience laughing and crying simultaneously!  I'm really so excited to move on from mental illness.  No more pity parties for this girl!!  I'm a new woman!  Watch out world...My kids are going to be so thrilled they don't have to eat chocolate glazed donuts with mashed potatoes for dinner anymore cause I got it together now! 

Alrighty...In other news around here..we are back to square one!  How exciting!  I thought we were getting ahead of ourselves there for a minute but nope...still on square one!  Spencer's cultures came back positive for Salmonella...still.  Again.  Still...I guess.  Not one thing we did in the hospital or at home made any difference whatsoever!  How thrilling to think that he has been suffering with this for 22 days and only 5 of those days have contained anything resembling antibiotics!  For the past 8 days...the bacteria has been continuing it's free for all in my son's gut!  

So...more antibiotics only this time for 14 days!  And...it's the antibiotic that C- Diff just adores so it will be super happy and start partying probably tomorrow in Spencer's lower GI tract.  And I do want to add this...Spencer is such a gracious host to not bother the bacteria while they have their heyday. 

I think I'll just leave it at this for now.  I need to go add a couple more entries to the grief process.  They forgot sarcasm as a stage of grief.  And my sarcasm right now is about to collide with panic and possibly 're-entry troubles' so I'm gonna sit back and enjoy the show.  Sorry you're going to miss that! 



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Sunday, November 15, 2015

A little Heaven in our home


I don't usually post twice in one day but I can't let this day slip by without recognizing the little things that brought Heaven a little closer to home today.

It's been an emotional day.  On my way to church, I heard a Christmas song and again, I was filled with gratitude for my Savior; His birth and His death.  The thoughts dangled on my heart and flooded my mind with all the ways in which we have been blessed.   I remembered that the Holidays are upon us and have always been the hardest two months of my life because of the overwhelm I feel daily for our blessings, the gratitude that we have been carried another year...  Another day I have been gifted to be with my kids.

The tears really ramped up when a sister I admire, and look to when my mind gets carried away with all the what ifs and maybes that come with an advancing disease, came to put her arm around me before Sacrament meeting started.  She lost her own precious son to Cystic Fibrosis.  She listens to the chaos my heart sometimes speaks and assures me that it is all part of loving these sweet spirits and part of the letting go.  She never judges, just has a calm reassurance for me that I can do this.

The tears carried me through the sacrament and I contemplated just coming home but to leave and walk through the chapel with a mess of tears on my face seemed less than exciting to me.  So, I sat there, alone on my little pew, hoping everyone else was completely distracted. Sometimes, there are no words for all the emotions I feel in any given moment...from fear to anger to gratitude to love.  Gosh...they can gain momentum as one collides with another on the other end of the spectrum of thoughts.

As I had left for Church and Shelbie left for her ward, I asked Spencer what he was doing for his Sacrament meeting.  He said he had planned to watch some conference talks again.  When I got home, I asked him how his 'meeting' was and he said he listened to Elder Holland's talk again on Mothers.

I found that to be an interesting choice for him. I was glad he had listened to that.  It made what came next a little easier.  We had to sit down and make a plan for him for this week.  A realistic plan.  Even though he is not feeling any better, we still have to make the whole college experience work because it was paid for with a Pell Grant.  It was a hard talk, and I cried.  He doesn't want me to be sad.  The mother in me wants to keep him home and nurse him back to health.  The mother in me can be selfish. I am a co creator with God and he gave me an extra dose of nurturing or something because I cry easily when it comes to my kids.  

After discussing options with his Dad too,  Spencer decided he better go back to Utah and finish out the next three weeks of school.  His dad and I will cover his expenses for the rest of the year until he his guided further in what to do with his job.  He wants to go back to the company his Mission President owns where he has been working since September.  They have been so kind to give him a job and I truly believe that they have prayed about the job to give Spencer.  It's not the job he wanted but without a doubt, it was the best place for him and he enjoyed working hard.  Spencer is too weak still to get back to that full time.  He doesn't want to let them down again, so it's a decision that only he and the Lord can determine.  For now...it's just going to be getting through school.

Needless to say, there are a lot of tears tonight.  My heart can hardly bear to drive him back to Utah tomorrow and say goodbye when he is still so fragile and weak.  But, no matter how far he is from me, he is the same distance from God.  I have to let him stay in the Lord's hands.  I had asked him to make a plan for how he was going to take care of himself.   I saw his list of goals and it surprised me that there wasn't one physical goal on the list... It was things like..."Attend the temple,  Pray for opportunities to serve, Increase my spirituality."

I love my kids.  They may get distracted from time to time and get caught up in the drama of what is happening in the world but when it comes down to it...they know where to turn for peace and direction.  They know that as they give themselves to the Lord, He will lead them along and the answers we seek and future we dread will work out.

My heart is full of things I can hardly express.  I love this song by Hilary Weeks.  She expresses everything I am feeling tonight and I pay tribute to everyone out there being tested with anything...He'll carry you!

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It's not what you think it is...

This has, without a doubt, been a difficult three weeks. There have been days, I couldn't say for certainty that Spencer would make it even another 24 hours.  Truth be told, it's been a difficult 23 years of disease with my three most precious blessings to whom I cling to for dear life.  It seems that the obvious problem here has everything to do with a broken immune system, failing bone marrow, shortened telomeres and aggressive bacteria that mows down whatever was left in a struggling GI tract.

But is it that obvious?  Is this really the biggest problem we face?

I wonder.

Today, I see a different picture as this coming week casts a dark shadow on this Sabbath Day...the Day I always look forward to.  The day I renew my strength and faith for the coming week and unseen events that will surely come.

Today, I have given thought to the children of Israel.  To Noah.  To Nephi.  To the Brother of Jared.  To all those who found themselves in a desert.  Lost.  Dark looming clouds.  Dead ends.  No where to turn but to God.  They all learned to walk with God; to trust in his plan for them. They traveled through the unknown together.  They learned to do the needful thing.   They learned to recognize, accept and rejoice in their daily bread, the manna that sustained them for the day.  They learned to live in the moment even though the situation most certainly called for planning and speculation. Bit by bit they built Arks without any experience, knowledge or even modern tools, they ate the manna, knowing more would come the next day.

I guess I have always seen my task in growing my Faith as the bigger challenge, even more so than disease.  If I had the faith, the peace, the courage that the children of Israel had or Noah or any of the Greats had, the disease process would have no meaning to me.  Financial trouble would have no effect on me emotionally.  I would see it for what it was.  I would embrace the truth that life goes on whether here, or on the other side of a thin veil.

Today, I am searching for my daily bread.  Today.  I am trying to feel Christ close by and take this walk with Him.  Today, I am trying not to panic about a million other things that have nothing to do with illness. Today, just as it is everyday, I'm learning to trust, to live in this moment, to increase in faith because at the end of the day, all I have is my faith to get through all of this; the disease process, the mounting financial burdens, the work that I am falling behind on.

It's the push and pull between my heart and my mind that is the real struggle.  It's seeing all the problems of mortality I have, but knowing from past experience that it's going to be okay.

So, on this Sabbath...I find myself calling down the powers of Heaven because we really need some direction as we embark on another tough week.




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Saturday, November 14, 2015

Plans for a Saturday

Today has been a pretty good day in terms of...everything I guess.

I was able to make it to the temple for my shift this morning.  It was a beautiful November day here and the sky was the deepest blue with just a dusting of powdery clouds.  I had to stop and take a picture...no filters on this!


It was a welcomed change of pace to sit on the organ bench for an hour and play quiet, peaceful hymns.  At one point, it was almost too meditative for this tired girl!  When I'm in the temple, there doesn't seem to be a care in the world.

I've been using my year's worth of studying about gut health to try to get Spencer some relief.  I know that if we can increase his alkalinity and stomach acid, we can restore some good healthy flora to aid his faulty immune system.  Lucky for me, I discovered that Spencer has this love for Mint Limeade from Cafe Rio.  It's the perfect drink for him.  The limes, though they seem acidic, actually increase the alkalinity in your gut once they get there.  The mint is soothing as well.  I found a copycat recipe and then changed it a little so there wasn't as much sugar.  I substituted Stevia because it is an alkaline sugar substitute.   Truth be told...he doesn't love my version as well but he will drink it.  I have also been able to get him to drink some baking soda water...another little trick up my sleeve.  I drink it everyday and it's not bad.  It has saved me from having to take horrible medicine for my Lupus.



This afternoon,  I decided to take Spencer out on a field trip and see how he managed.  He is trying to decide if he should try to head back to Utah and try to salvage what is left of the semester.  I don't think he will be able to get back to work, but school may be doable.  

Anyways, he loves skiing so we went to the Ski Shop in Idaho Falls while Shelbie did a photo shoot down by the river.  He did okay and was happy to be in his element after being in bed for a solid week and a half.  Then, we ran over to the mall to find some clothes that might fit him.  He has lost a grand total of 30 lbs since his mission.  He is so skinny.  His Sunday shirts and suit just hang on him like he is playing dress up with his Dad's clothes.   His t shirts and jeans hang, with hardly an outline of his body showing.   About 30 minutes into that and he was done.  His head was pounding and things were spinning...not to mention the pain.   

It was a good effort and good to get out of the house for some fresh air.  I was pretty nervous to have him out.  I wished he would wear a mask to protect him from anymore germs but that wasn't going to happen.  The only other precaution we took was not letting him touch anything.  

He was in good spirits today.  He rarely complains about all the discomfort he is feeling.  Monday we should get cultures back to see if the Salmonella is still hanging around.  If it is gone, then that will leave us in an interesting bind...facing the reality that what he is feeling now is permanent damage from the bacteria and I'm not sure where we go from here to find good health again.  We are headed into week four of this little dramatic twist in our lives!  

It's going to be a big week.  Hospital visits for two of us, Hematology for Spencer and maybe back to school...oh and work.  I almost forgot I have a job or two or three!  Ahhhh...












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Friday, November 13, 2015

Remember the past

Today, I have been remembering some of our past experiences.  It has made for a much better day.

I remember the day I got divorced over 10 years ago.  I know what you are thinking...how can remembering a divorce make for a better day?  Well, here we go.

I was trying to find a place for the kids and I to move to and a full time job.  Nothing was working out.  As I drove around looking at rentals and cheap places to buy, this song came on the radio.

After I heard this, I started watching closer for God's plan to unfold in my life.  I saw His mercy, His blessings, and even His purposes.

So, today, we embarked in a continued effort of Faith, trying to remember that God is His own interpreter.

I heard from the ID nurse, the C-diff rapid test came back negative.  The Salmonella cultures are still pending.  He was also testing for some new strains of Salmonella that may have been missed or perhaps mutations of the original strain he has.  There is also a chance that given his poor immune system he will have chronic symptoms rather than acute Salmonella symptoms.  If all of that comes back normal, then, I don't see that there is anything more we can do.  The damage has been done and we will need to figure out how to move forward.

Life for us truly does unfold hour by hour.  The pain Spencer was in last night is not constant today, he gets little breaks now and again. He is still bleeding, still just as sick as he was two weeks ago. Basically, the only thing that has changed is the way we are looking at things.  I have no idea how things are going to work out.  It is impossible to see let alone understand at this point so, we will watch closely as the plan unfolds and remember that God has always ridden out the storms we find ourselves in.

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Thursday, November 12, 2015

Rough Day


Man, what a rotten day!

It's just heartbreaking to see this boy of mine so sick.  I just wish we could see one little glimpse of improvement in anything.

Spencer has been pretty depleted all day.  We met with the Infectious Disease Doc.  He was a nice guy, a total disease geek.  He seems to be energized by talking about infectious disease.  I like a doc that is totally into his work.

He said that by day 4 of antibiotics, people with Salmonella or C-diff should be completely back to normal health.  The fact that Spencer is as sick as he was on day one, if not sicker is not good news. They decided to retest for Salmonella and C-diff again.  Hopefully we will know by tomorrow if the bacteria are still active.  He is bleeding again only this time higher up in his gut because the blood is black which means it has passed through his Intestinal tract and mixed with digestive juices.

Tonight he is in a lot of pain.  Really uncomfortable.  His heart rate is pretty fast and he can barely move, he is so weak.  I am really worried. I would like to take him back to the hospital and get fluids but he isn't really keen on that idea.  So, I pumped him up with Tylenol, some pro biotics and other homeopathic stuff in hopes that he just gets a little relief.  I can't imagine another day of this for him.

I find that I do better when I can see that they are hopeful and managing but as soon as their spirit drops, it gets really hard.  Especially Spencer.  He never complains.  He pushes himself no matter how he feels but tonight, pushing through anything would be an impossible feat.

Today, as we sat in the doctor's office and he was asking about our family health history, it hit me that I have two other kids in the same rocky boat.  Maybe not as bad right now, but not that great either.  Shelbie has missed two weeks of pulmonary rehab and it is starting to show.  I've been making her and Sam use the upstairs bathroom so Spencer can have the main floor bath and I can keep it quarantined better, she can't even make it upstairs without having to stop and rest.

Ahh...I sure hope God knows what he's working with here.  I'm not sure I was cut out of the right fabric for this.  But...I know it could be worse.  A family just lost their 13 year old daughter to cancer this week.  My friend passed out at her son's house and she has been unresponsive since Monday. I am so grateful for my health so that I can be here to take care of my kids. Never underestimate the ways in which God can help us grow.
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Wednesday, November 11, 2015

Fresh out of funny

I promised something funny today but I'm fresh out of funny.   It started out to be a pretty good day.  Here is a conversation I had with Spencer at about 1:00pm.

"Mom, you won't believe this but I have the most amazing feeling in my stomach!"
"Really?  You're finally feeling better?"
"Like, it's nothing I have ever felt before! It's amazing.  You know when your stomach just feels amazing?"
"No, I only notice my stomach when it doesn't feel amazing.  Are you messing with me?  Do you really feel amazing or not?"
"Ha ha...no!  I am in the worst pain ever.  I feel like there is a little army of men in my stomach with swords and knives.  I am in amazing pain!"

He says all this with a smirk and grin on his face.  I never know with this kid!  Shortly after that, or sometime this afternoon, the bleeding started back up.   I'm guessing it had something to do with the amazing feelings he was having.

My quest to feed this boy protein was an epic fail today.  It's not because I didn't try but he doesn't eat much and I couldn't think of anything creative to make.  For dinner, I decided on slider burgers.  I know...it was a big deal for me to break out some ground beef and make my own patties.  I made them rice paper thin.  As they sat in the pan, flatter than a pancake, I chuckled to myself as I thought about what the comments from the peanut gallery were going to be.  When I say thin, I mean, 1/8" thin.  I was determined to cook those clear through!  ha ha... No Salmonella in this house!  Well, in my kitchen.  I kept cloroxing the one flipper I had and cleaned it in between burger flips.  Yes, it was a production and yes, slightly obsessive and yes, even crazy!  Do I care?  No.

When I brought them to the table, the first comment was on how thin they were.  "These aren't your usual, thick sliders.  What happened?"

"I wanted to make sure they got cooked clear through so I made them thin...Salmonella and E Coli free!  You're welcome!"

They actually loved them!  They all had seconds.  Even as I type this, I'm laughing because seconds wasn't that hard to achieve, I should have taken a picture of how pathetic they looked, but, they said they were the best homemade hamburgers I've ever made!  Wow!  I was pretty surprised! That statement doesn't really say much for my cooking.  But rest assured, if you ever eat anything I make, you can be sure it was made in a sanitized kitchen with safer cooking habits than the environmental protection agency themselves!   Thank goodness these kids aren't too picky! I didn't exactly think they were the best but I did manage to choke one down and they were alright.  The bonus is that I only used like a 1/2 lb of hamburger for 8 patties!!  LOL...I'm a crazy person but they seem to love me.  I don't really get that but they do!

Tonight,  Spencer wasn't laughing when he was feeling incredibly nauseated and other stuff.  Some meds settled things down just in time for him to visit with his best friend.   He was also feeling a little discouraged about what to do with his life.  He doesn't think he can move back to Utah and keep the same schedule he kept and he even thinks that maybe his job will take more energy than he has left.  It's hard to judge next week on the way you feel today- still in the throws of illness.


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The Messy Middle

One of my favorite authors is Brene Brown.  I love everything she has to say and the way she says it.  She is an amazing wordsmith too! (I guess that was redundant...)  I follow her on Instagram and last night, this was her post...

"Act II:  The middle space.  The part of the story where the main character is lost and struggling.  She tries to find the way forward by taking every path except the ones that require vulnerability.  The struggle continues until she finally realizes that the only way home is through vulnerability.  Into the dark.  I hate Act II.  I love Act II.  The middle is messy.  But, it's where the magic happens.  We live in the rumble." Brene Brown

We are definitely in the messy middle.  I think a week of only getting an hour of sleep here and an hour there caught up to me last night.  I kind of struggled in a big way and I ended up with a fever and felt horrible.  I had to work and then came home and fell into a chair and watched Spencer and Shelbie try to get Photoshop working on Spencer's computer.   Sam got home from Young Men's around 9:30 and I took some Nyquil and went to bed.

Once in bed, I had me a good little, quiet cry.  The kind you hope the kids don't hear.  The kind I usually reserve for the shower at 1 am.  I think I was just so tired.  In the middle of my good cry, I felt a tap on my shoulder and it was Spencer.   Usually, when I get a tap on my shoulder, when I am in bed, it means that someone is about to puke, or has a raging fever, or stopped breathing or something I am going to have to take care of. Occasionally, it's Shelbie telling me they are going to McDonalds for breakfast at midnight!

This time, Spencer said, "Mom.  I am sorry you are sick.  You spend so much time taking care of us all the time, I just wondered if I could do something for you tonight? "  Somehow, that made everything better...well, not my fever but the messiness of yesterday seemed just a little bit tidier.

When he left, I resumed crying until I fell asleep crying.  I woke up at 2:30 and realized I wasn't crying anymore.  That was nice!  Sometimes, I wake up hours later still crying. (confessions)

It is definitely a messy middle.  A rumble.  One day, we manage just fine and it really feels like things are improving and the next day,  or even moments later, it feels like I am watching death roll slowly towards our front door, ready to carry one of my kids off.   Those are the moments you flail around, looking for something to tether yourself to...but, it passes.  

I know I need to post more pictures and I will try.  I just don't like to see Spencer so thin and frail and I don't want to remember these days...I want to remember what I am learning but I don't want to remember physical things.

My next post is going to be a happy one!  Despite the sad things and hard things...the kids are happy!  They really are!  I hear them laughing with each other all the time!  And...that makes the rumble of the day a little more bearable.


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Tuesday, November 10, 2015

Finally!!!

Finally, we have a care plan!
Finally, for the first time in three weeks, I feel supported by someone with a medical degree that didn't come from WebMD.



This morning, we met with our PA provider Andy B.  He works in the tiniest town but I really like him.  He is one of the few that hangs in there with us and actually communicates.  I really appreciate it when he tells me he has no clue what to do.  At least he is honest and humble and then we can bounce ideas off each other, I share my research, he adds his knowledge and we actually get somewhere.

Andy made contact with infectious disease docs in Idaho Falls and we will be visiting with them.  They are the experts in these food borne toxins.  He is also conferencing with a new Hematology group in a city a little over an hour from here and if they accept us, we will have our new Oncologists on board.  So, I felt hopeful after leaving Andy this morning.

Then, I  finally heard from our GI doc and that was a relief too!  He was pretty much speechless.  He said that he has never treated a patient with simultaneous cases of Salmonella, C-Diff and Cytomegalovirus.  He said, "You guys are pretty special!"  I didn't exactly find comfort in anything he said but I appreciate the education.

He said that because of Spencer's poor immune system, it is likely that the Salmonella toxins have already destroyed the absorptive lining of his gut and he will probably not make a full recovery because he was already so sick when the bacteria hit.  Here is where it gets complicated.   The telomeres protect the chromosomes in his gut lining from being damaged as they continually create new cells.  Spencer has such damaged and short telomeres that his gut lining was suffering to start with.  Now, we just added a toxic bacteria and the damage has now tripled.   It's also quite possible that Spencer will now be a chronic carrier of Salmonella because of his bone marrow failure. I have no idea what this means and frankly, I didn't want to go there today.  It's been a hard enough day!

I asked him about tube feedings or vein feedings for Spencer who looks like an encampment victim, and he said there is no way he is going to break through any artery with a central line, with him in such a fragile state.  In 6 weeks when, hopefully, the C-diff is treated, we will re-test and try to get a better understanding and picture of what is happening. This will mean Christmas in Boise...at a hospital.

I am feeling very concerned.  One thing I have had a very hard time with since Saturday is food.  I can hardly step foot into the grocery store.  Everything I look at is crawling with bacteria.  It kind of freaks me out.  I've mostly been feeding the kids carbs...cereal and bread. (I know, don't judge me!) Someone brought soup over last night and that was good but it took all I had to not think about how even food, can make my kids sick.  As we have found out!  Dr. Thompson, our GI in Boise said I need to be feeding him very small, regular portions of just protein, like "eggs and bacon".  Salmonella destroys the parts of the gut that absorb carbs so I have actually been making things worse for Spencer.  Ahhh....I can't seem to win.

But...the thought of cracking an egg, the very possible carrier of the bacteria we are fighting is going to take an act of God. Protein is my nemesis right now...and water...and swimming pools...and restaurants, and breathing...and all food really.......Chlorine bleach is my consolation...if only we could drink it!

I'm thinking the trial here is not really what it may seem...or maybe it is.  Maybe there are layers upon layers of adversity and each day, we peel back another really hard thing we didn't know was there.

For now, I guess we just do the needful thing.  I really need to start making some money and try to focus on work instead of bacteria.  We are also really trying to stay busy as a family, doing what service we can.  Of course, we don't want to freak people out with our germs but we can just sit here feeling sorry for ourselves either.  So far, it's working.



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Stuck..and other news

Sometimes, I feel like we are stuck.  Sometimes, I can't imagine that anything is ever going to be different than it is today.  Sometimes, I think I have forgotten what life use to be like...before the hastening of trials began.  Sometimes, I'm afraid to think of what is coming next. Sometimes, I just feel like we are stuck.

In Salmonella news...I think I can say that Spencer is better in some ways!  That's a direct result of prayer.  I keep hearing that Infectious Disease Docs voice in my head..."brace for the worst"  This hasn't felt like the worst thing we've been through.  I can't help but know that this is a direct result of prayer.  We've had episodes of strep throat much harder than this...well, maybe not exactly.

Today was the first day in 8 days that there hasn't been any blood escaping from his body!  That's pretty much the extent of the good news.  But that is great!  Everything else is pretty much the same.  He is still having a lot of joint pain, headaches, and cramping but only when he eats...so, he gets around that by not really eating much which is not a good thing.

Tomorrow will be our first day without the antibiotics so we will be watching closely to see what his immune system does on it's own.  I'm anxious to get a blood count too.  I am hoping that I hear from our GI doc in Boise for a little direction and I think I will run him in to our family doc just because I need some reassurance and company from someone with a PhD.

Decisions...Spencer has been waffling all day about what he needs to do with his life.  Boy, I'm not sure if I feel more anxious for him on the virus and bacteria he is fighting or the life decisions he has to make.  He told me late this afternoon that he wants to move home.  He wants to try to get through the last three weeks of class and then call it done for now.  I just don't know how I feel about that.  Of course I would love to have him close but that isn't much a plan.  He needs a purpose in his life so he needs to massage that thought just a little longer.  I told him the time to make a decision like that is not when you aren't even getting enough calories to feed your organs.  It has been an emotionally charged day and it almost ended with a long talk about dying which is never fun! I promise.

An apology...  I know that there are probably a hundred people reading this who know the doctor that I have had my problems with. And probably the PA I took my anger out on. For all I know, they are reading this, their families are reading this.  I live in a small town and everyone is related to everyone but me!

 I want to apologize for anyone I have offended as I have expressed my frustration here.  These providers are very well established and highly regarded in the community and in their practice.   They are cancer doctors.  I realized today we are well beyond the need for a cancer doctor.  Perhaps I was asking too much of them.  He became our primary care doctor, he had to venture way out beyond the realm of cancer and into the arena of pulmonary AVM's, Fibrosis, telomere disorders.  At one point, after our DC diagnosis, I asked him if he was still comfortable taking care of the kids since things were certainly becoming more complicated.  I didn't mean to offend but maybe I did.  I'm not really sure what happened but I know the past year has been different.  I have tried so hard to be a good patient and not expect too much of him. The experience this past week was not favorable for either of us.  I really wish it hadn't of happened the way it did.  I was upset and the lack of communication and confusion and the fact that I never had anyone who knew our situation to talk to, ask questions of and feel supported was too much on top of everything else.  I felt abandoned and wasn't very good at communicating that without getting emotional.  I should have handled it with a little more grace.  We both made mistakes.  I still think that he is a kind, caring man for his cancer patients and really does have a cerebral way of thinking through things.

Okay...well.  It's been a day.  I'm tired... Again!  Ha ha...Life goes on!  If you had of asked me last Wednesday where we would be this week...I would not have guessed at home, with all three of my kids down in their room laughing and making the best of a very hard situation!  So...it's all good!

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Monday, November 9, 2015

Remember When...

Remember yesterday when my motto was "Perplexed but not despaired"?

Funny thing...life comes at you fast sometimes and despair...it can really catch you off guard!

This morning, I am feeling very much like a hypocrite!  Ha ha...Funny.  Not funny.

I guess because last night, Shelbie had some symptoms crop up that has me worried we are headed down a similar track with her.

Today, it became extremely clear that we have absolutely no plan for how to move forward.  We had no follow up instructions so we are just hanging out to dry.  We just jumped out of an airplane at 10,000 feet and totally forgot to pack our parachute.  I hate it when we do that!

In other words, we have no doctor.  Our Hematologist in Seattle moved to Boston and she isn't open for business yet but even still, what can she possibly do a million miles away?  We didn't get established with the new Seattle doc but in my lovely insurance letter, Seattle is now out of network anyways.  We have a family doc but I'm not sure he is going to be able to do much since he always has to refer us on anyways so...the pressure is on.

I am just really waiting on the Lord for some direction.

I did make a call to the Public Health Department for the State of Idaho and have made contact with the Epidemiologist for the State.  Hopefully, he returns my call after hearing my message.  I am feeling more and more that Spencer contracted Salmonella from the water here at home.  It just seems unlikely that it was from a restaurant in Utah. None of his friends he ate with even had as much as a hint of illness.  But, I have talked to a dozen people who had many family members with diarrhea even before the City let the public know there was a water problem.  I am hoping they will have some ideas of what direction to take this.  I have heard that there are Infectious Disease docs in Idaho Falls and I am going to look into that.  I will also start hunting a new Oncologist in Pocatello and Utah.

In the back of my mind...I have this crazy idea of taking Spencer back to University of Utah, which is in our network (they just didn't have any beds) and taking him to the ER.  At that point, they would probably call in Hematology/Oncology, Infectious Disease and Gastroenterology and we could begin setting down some new medical roots.

As for Spencer, he seems a little better today but he hadn't eaten anything until I got home for lunch and that is typical.  As long as he doesn't eat or drink, he feels okay.   He said the joint pain is manageable and his neck is not as stiff and his migraine has backed off.  He took his last dose of Cipro for the Salmonella.  Now, we just need his impressive immune system to kick it to the curb.  I am rooting for those little cells!  C-diff is just going to be another long story before that goes away.

Mentally, he is struggling.  He is anxious about an apartment he is paying for but not living at.  He is anxious about school.  He is anxious about not having money to pay his bills. He is anxious about his job which he was let go from.  They are really great employers though.  It's just kind of funny, in one week, he got a promotion, a pay raise and fired...he likes to joke about that.  Really though, they said when he is better they will find a place for him to come back.  I am so grateful to them!  That's pretty amazing.  He is anxious about getting back to work maybe next week and then asking for Thanksgiving off to come home and see his family.  So many things to worry about.

Spencer wants to go back to work and school this week.  Without any knowledge about anything, that doesn't seem like the best plan.  Even if he gets to feeling better by Wednesday, we still have a major weight and malabsorption issues to deal with.  He has lost even more weight with all the latest problems.  Not only that, it would be totally unfair to his roommates because we don't know to what extent he is contagious.    I understand that he is tired of being sick and I understand that days like this happen.  I just don't really know what to do about it.

Believe me, I would rather he was back to work and school.  I can't afford to pay his rent and mine and all the other bills piling up when I haven't even been able to hardly work for over a week.

So, today is just all around hard... I guess it is to be expected.

A plan is what we are praying for.   Just a little direction because right now, I have no clue about anything!!

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Sunday, November 8, 2015

Spiritual Confidence

Here's something funny...

Tonight, I opened a weeks worth of mail and guess what?  There was a letter from my insurance company saying that they are raising my rates by $150 or something crazy.  But...here is the irony.  Starting in 2016, if you have to go to an emergency room out of network and need to be admitted, they will cover it as if the facility was in network!!!

God works in mysterious ways!

I am still a little miffed about our whole experience here at home.  I have been praying to try to understand why Heavenly Father would direct us back here only to discover that we had absolutely no medical support.  It's been completely bizarre and has made no sense at all.

I was thinking about the message I received a few days ago about praying for wisdom and understanding.  I thought about the quote I saw in the elevator the day I went to get Spencer, about wisdom, "Wisdom is the power to judge rightly, following the soundest course of action based on knowledge, experience and thinking."

As I sat in church, I continued to ponder on our situation. I decided that it comes down to what this trial is about anyways.

 Faith.

 It comes down to the fact that I am suppose to be relying on faith and Heavenly Father, not on doctors or anyone else.  I really think that is why our primary care doctor has been missing in action.  I think this is why they sent a PA who had no clue.  I think this is why we have felt completely abandoned by man and totally alone, medically speaking.  We have been lifted up in prayer by hundreds and that is an incredible gift!

 I read this passage of scripture. "I am the light which shineth in darkness and by my power, I give these words unto you.  Put your trust in that Spirit which leadeth to do good, yea to do justly, to walk humbly and to judge righteously and this is my spirit.  Verily, verily, I say unto you, I will impart unto you of my Spirit which shall enlighten your mind, which shall fill your soul with joy."   I've been trying to put my trust in a doctor that never showed up.

I'm going to let the anger go I have toward our doctor.  I'm still not going to go back to him ever...but I'm going to forgive his poor behavior and move on.

So here some thoughts that I will try to live by this week...

" Perplexed but not despaired"
"On our Savior's love we rest"
"As sorrowful, yet always rejoicing; as poor, yet making many rich; as having nothing, and yet possessing all things." 2 Cor. 6:10

Finally..."Force a smile, gaze Heavenward and say, "I understand Lord.  I know what this is.  A time to prove myself isn't it?"  Jorge Klebingat

I love another thing that Jorge Klebingat said, "Confidence comes when we have the kind of Faith that produces a steady stream of tender mercies and even mighty miracles."

Without a doubt, there have been a steady stream of tender mercies. To visit with Spencer and feel his strong, hopeful spirit you will know that he is a miracle.  You wouldn't know the kind of pain and discomfort he is in.  It has been so time consuming and exhausting to get the house in order to contain any spread of bacteria from Spencer to the other kids but anything the other kids pick up to Spencer.

The kids have been amazing to co operate and help out with stuff.  I finally finished sanitizing the last of Spencer's belongings and clothes.  The house has been bleached down three times today.

As for Spencer, he is trying so hard to be in good spirits but he is in significant pain with a migraine and stiff neck that continues.  He has hardly eaten anything today because of cramping and pain.  For now, the fluid he got in the hospital is sustaining him.  Tomorrow is his last day to take the antibiotic for Salmonella.  From there...our faith will need to double that his body will fight the remaining bacteria left.  We still have C-diff to fight and Cytomegalovirus.  I really wish he had just one little working white cell.  Just one!  Imagine what god could do with just one good cell?!  Let's wait and see what God can do without any decent cells to work with...
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