Tuesday, September 29, 2015

In Theory

Today was all about theories.   That's just a positive way to say, still no answers, just a bunch of theories.  However, it was another step today.

We started out at our family doc.  Our PA left the practice we have been going to for ages and moved to another town.  We love this particular PA.  Let's call him Andy!  He's been gone about a month.  I couldn't stand to lose yet another doctor on our team so with a little hunting around, I tracked him down in a tiny town North of us.  He is in the smallest, red neck town but I don't care.  He is kind and very smart.

I told him my diabetes theory and asked him if I was going crazy to think there might be a connection.  He felt like it was a possibility as well, especially when he went through all the symptoms of diabetes.  Spencer answered yes to every single symptom!  Things I didn't even know he was experiencing.  The thing about Spencer is, I call him and ask how he is doing and he always says, 'great'  even when I know he isn't.  So again, I was flabbergasted when he kept answering yes to the diabetes profile.   In theory...it seemed like it was a no brainer.  In reality...his test came back completely normal!  Even the blood work that looks at a three month average...normal.  Even if we did the formal testing, it's a long shot.  Both Andy and I were floored that it was normal given all his symptoms.  Ahhh....

One thing Andy did suggest was adding Immodium to his liquid diet.  He uses that for many patients with chronic diarrhea because it is an anti spasmodic drug and relaxes the GI tract.  I am so hoping this works...even a little!   That's why I like Andy, he doesn't give up on us even when the problems are perplexing.

From there we headed in the opposite direction for Pulmonology.   More surprises!  He said Spencer's pulmonary function test was pretty normal.  He almost had to scrape me off the floor!  They had to give him oxygen just to make it through the test!  I started to say that and he said, "But...there is something not right with that.  I see in the notes that he couldn't get through the test without oxygen."

YES!!!  "And," he continued, "His lungs never changed in capacity from the start of one test to the end.  Even in asthmatics, the lungs show a radical pattern of peaks and valleys as they are strained and then recover. Spencer didn't show that."

Spencer talked about how he can't even climb a flight of stairs at school without having to stop to catch his breath.  He talked about how he wakes up clamboring for air and can't get any, even after taking his rescue inhaler.  I mentioned about the two episodes before his mission when he was turning purple from lack of oxygen and the nebulizer and steroid inhaler didn't work for nearly an hour.

After talking about all the issues, he said, "I am afraid this is not a good pattern.  I was hoping you would tell me the rescue inhalers made a difference.  These experiences reflect the odd pulmonary function test."

I asked him what would cause his lungs to not expand like they should, maybe it's just because of his asthma or allergies.   He said it is a typical sign of Pulmonary Fibrosis and/or Pulmonary AVM's.  And given that his fingers have severe clubbing in them, a sign that the body isn't getting enough oxygen and he has extremely poor circulation, this is likely what we are dealing with...in theory!

Of course, my insurance has denied the tests that will show us these issues for certain.  So, the next step is to see the cardiologist specializing in congenital heart defects.  With a little hope and prayer, he will be able to have some pull with our insurance company.  The pulmonologist was going to talk to our new cardiologist and explain what we are up against from a lung stand point.

I was so glad to hear that he is actually going to call the doctor to have a real live conversation with him before we get there.

He was really concerned about the weight loss and pointed out that Spencer is very dehydrated.   I figured as much but the only way to fix that outside of drinking a gallon of water a day, on top of his mega calorie liquid diet, is to do a week or so of IV fluids.  Well, try telling a 21 year old kid working full time, going to school full time that now, he has to show up to a hospital every day for an hour to get fluids.   It's not going to happen.

So, here is the plan for this week.

Continue the liquid diet but add in food as he can tolerate.
Start immodium
Start a steroid inhaler to try to manage the wheezing
Add a broncodialtor
Record Peak flow lung function three times a day

I also changed his pro-biotic to a stronger strain and added a pre-biotic.

Oh, I should mention this bit of good news...he didn't lose a pound but maintained.  Maintenance is better than a loss but honestly, he was extremely pale and very weak.  Ahhh, I don't like seeing him like this.  I really hope this plan allows us to see a little improvement.

With that, we said our goodbyes until next week, when we all go down to Salt Lake for Cardiology.
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Spencer's Home

Spencer came home tonight, in fact, he just barely walked in the door.  He is getting some last minute homework done so I am sneaking in a post.

It's been an emotional couple of days.

He came home because he is meeting with the Pulmonologist tomorrow to get his pulmonary function test results and chest x-rays.  I think I have been traumatized by pulmonology visits this year and that might have something to do with my slight unraveling.   It's never been good news and considering they had to put Spencer on oxygen just to finish the test, makes me even more nervous.

We are also meeting with another doctor to discuss the possibility of diabetes and to get a referral to a motility specialist. So, it's going to be a long, hard day tomorrow.

When I start feeling like this, I just wonder to myself...Why don't I just quit?  Quit taking them to find out what is wrong.  Why not just let them live and whatever happens, happens?

For me, it comes back to my quest in life...live without regret.  I couldn't sleep at night if I was always wondering if I did enough.  Maybe I am doing too much.  I always tell my kids that whenever they want to stop going to doctors, I will support that.  So far, they have hope that there will be something to bring them a little better quality of life.  They seem to do okay with it...at least better than me at times.

Right now, I am in my office typing this but I can hear the three kids laughing and catching up with each other.  They are happy!  They are so happy!  I am here, fighting the tears because it's just so hard and so incongruent.  I really don't want to hear the doctor say he has Pulmonary AVM's or Pulmonary Fibrosis.  Tonight feels a little like the climb to the top of a roller coaster just before the drop.  The drop when your stomach crams into your throat.  The drop when you all of a sudden decide that you really don't like roller coasters and you want off now!

Ahhh, this too shall pass.  When it's all said and done, I'm so glad he's home, even it if is only until tomorrow at 5.


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Sunday, September 27, 2015

Meaning-Full

Dieter F. Uchtdorf asked if we are resentfully enduring or living a meaningful life.

This is a big question.  Without a doubt, there are moments, even days when I feel like I am resentfully enduring but I think with time and age and experience...I have figured out how to be less resentful and live with more meaning.  Its all part of my evolution I guess.

I have thought about this a lot today.  I look at my kids and they are surely one of the best examples I have of living a meaningful life.

Shelbie works her little heart out.  She has started a business right out of high school and it has grown into something she is proud of.  She could just as easily sit around feeling sick and sorry for herself.  Earlier this week, she can home late from a photo shoot and ran in the house to grab something and on her way out said, "I'll be back!  I'm running to the store but first, I saw a homeless guy at the gas station, he needs some money so I'm going to give him some money- he's pretty creepy looking though."  With that she was out the door!

I was so busy with something but with that comment, I literally dropped what I was doing and ran after her before she pulled out of the driveway. "Shelbie, if the guy is creepy, I don't want you getting out of the car.  Wait until Sam or I can come with you!  It's not safe." She wouldn't wait.  After an hour of not being able to get a hold of her, I started to worry.  I drove down to the gas station, and there she was sitting on the curb talking to this guy and his wife.  For an hour, she learned all about their life, their grandkids and why they left their life in California and why their car is now their home.  She also bought them a tire!  That is why they were stranded here.  They had no money to buy a new tire for the one that was bad.

This is the heart of Shelbie...she gives and gives.  She has the biggest heart of anyone I know.  She is living a life full of meaning!

Then there is Spencer.  Spencer is sick but to look at him, to spend time with him, you would never know.  He works harder than you can imagine.  He never stops to complain or take a break or call in sick.  Imagine working a physical labor job for 13 hour shifts while having extreme stomach pain, nausea and chronic diarrhea.  Imagine that!!  He looks for ways to serve and jumps in and gets the work done...even after his paid job.  Spencer could easily sit at home and feel sick but he is living life.  He could even go home after his long days and go straight to bed but he doesn't he is always learning new things, finding exciting things to do.  Spencer is living a life full of meaning.



Sam is just a joy to me.  He has had a hard year as well and struggles with fear of what is happening to his health.  Sometimes, I get impatient with him because all he wants to do is play.  He has a great job, but he has a huge fear of missing out on fun with this friends so it can become a struggle at times but he always makes the right decision in the end.  He has the best friends a kid could want!  I am so proud of him.  Last night was homecoming and Sam's first dance!!! Can you imagine a handsome kid like Sam and this is only his first dance?  He's a senior!  He chose such a gracious, modest, beautiful girl to go with.  I adored her.  The group came here so Shelbie could take their pictures and she kept telling Sam how cute he was, how strong he was!  That boy was in Heaven!   Turns out, when the dance was over, he stayed behind to help his date's mom, who was on the clean up crew, to get things cleaned up so she could get home sooner!  Sam always does things like this on his own.  He continues to surprise me with such loving things he does.  Whenever I sign him up for 'service' projects, he jumps in wholeheartedly.  Sam is living a life full of meaning.

We have our moments but I am proud of my kids for trying so hard to not waste one minute of living.  We have a lot of problems but we have a meaning-full life.
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Thursday, September 24, 2015

The experience of being

Today, as I sat in a darkened hospital room, listening to Shelbie keep the rhythm of hospital life with her quiet, sleepy breaths, I thought about life.

My life.  The big life I find myself living every day.  And though I find it hard to be gentle and forgiving of the times I am weak in my faith and overcome with fear...boy, I've experienced it all; every feeling you can imagine this wild life can toss up and even feelings that words have yet to describe.   If I were to die tonight, I would have no regrets...Whatever the world and those around deem me to be, whatever judgments they want to measure me against, it makes no difference.  I did my level best.

I have experienced the depths of heartache and grief but deeper still a joy that can transcend even the most chaotic of days.

I have experienced what it's like to feel everything at once and nothing at all.

I have experienced connection and empathy.

I have experienced great and suffocating loneliness.

I have experienced God's love and the Devil's lies.

Most of all...what I experience every day, is a fierce love for my kids I didn't know was possible.  I experience every day, a subtle angst that I may lose them at any moment.  It's in these moments, I hang on for dear life, maybe too tight.  I breathe in their very being and existence with an eager expectation that it will never escape the moment, hoping to exhale added years of good health.

Everyday, I see the love of God, leading this tired mom along, sending Heavenly postcards and directions and Angels and happenstance.  Miracles.

And this is what makes the experience of being, whatever that is in the moment, worth all the sleepless nights, tear soaked pillows, restless dreams, walks with grief...worth it in the end.

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Wednesday, September 23, 2015

Grace upon Grace

Today has been a much better day!  Whew...

So...what changed?

Not really anything.  I mean, the problems are still glaring and scary.

But...I changed my attitude.  Late last night, I emailed Spencer a pep talk that we both needed to hear.
I sent him this quote by Jorge Klebingat

 Accept trials, setbacks, and “surprises” as part of your mortal experience. Remember that you are here to be proved and tested, “to see if [you] will do all things whatsoever the Lord [your] God shall command [you]” (Abraham 3:25)—and may I just add, “under all circumstances.” Millions of your brothers and sisters have been or are being thus tested, so why would you be exempt? Some trials come through your own disobedience or negligence. Other trials come because of the negligence of others or simply because this is a fallen world. When these trials come, the adversary’s minions begin broadcasting that you did something wrong, that this is a punishment, a sign that Heavenly Father does not love you. Ignore that! Instead, try to force a smile, gaze heavenward, and say, “I understand, Lord. I know what this is. A time to prove myself, isn’t it?” Then partner with Him to endure well to the end. Spiritual confidence increases when you accept that “often trials and tribulations are allowed to come into [your life] because of what [you] are doing right” 
It takes so much effort to keep your head in a place of hope.  The work is emotional and mental.  It doesn't take much to throw me off track but it takes an overwhelming amount of work to get back on track.

I talked to Spencer tonight and he went to a nutrition store and bought a bottle of weight gaining protein powder.  One serving has 1900 calories!  I had no idea this existed.  One serving is 32 ounces.  It costs $70 a bottle and it will last 8 days!  Ummm...I'm not sure this is a reasonable thing to count on but from now til Monday...it's worth a shot to see if it helps.  He drank one serving and had a some Panda Express so I'm guessing he was able to get in about 2400 calories...he got sick from it as usual, but at least it was a good start for calories.

We also talked about if he thought maybe doing diabetes testing was worth it.  He said he has always felt like maybe he had issues!  It's kind of a surprising to hear that from him but I think we will pursue this.  I may be way off but I will never know unless we try this.

It's been a day of grace.  I was able to focus on work and do some service for others and that changed things. I am glad that I can rely on prayer for getting through.  Tomorrow, the plan is to keep the faith.  One day at a time...grace upon grace...little by little.



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Tuesday, September 22, 2015

It's a plan...I guess

It's been an interesting day with emotions all over the map!  

I called our Gastroenterologist first thing this morning.  He returned my call at 9:30am.  I really feel strongly that Spencer needs a feeding tube.  He is trying so hard to eat but it's almost impossible to eat enough.  The lower his weight slips, the more difficult it becomes.  He is burning at least 700 calories every day at work.  His organs need at least 1200 calories to keep functioning properly so right there, he needs about 1900 calories just to maintain the low weight that he is at. He needs to gain weight!  The doc said he needs to be eating more like 4000 calories a day.   Let's not forget that whatever he puts in his mouth is out of his body one way or another in 10 minutes or less.

Here's the kicker...the doc wants him on a liquid diet.  4000 calories of liquid and dairy makes him doubled over in pain so milkshakes are out.  He wants 6 days of this and then we will reassess where his weight is.

A feeding tube means he could have a continuous feeding all night long, maybe even get in 1200 calories or more.  During the day, he could do the liquid and any other food he could manage.

The GI flat out says no.  He said Spencer just needs to eat more.  He physically can not eat more!!!  Why don't people understand this?  Ahhh....this is killing me!

I called Spencer back and told him the plan so he was all for it.  He's been in classes all day, just got out at 8:50 pm and now has to drive around trying to find a good weight gainer protein powder to start this wretched diet!  He's tired, frustrated and sick and now he has to try to worry about this.  It is taking everything in my power to not get in the car and drive down there and take care of my boy!!

It breaks my heart!  To no end!  

All day, when I wasn't panicking, I was screaming inside.   When I wasn't screaming inside I was pretty much fine and knew that things would work out.  Oh the roller coaster of life!

Nothing is easy anymore.  Not one thing ever just comes easy...yes, I'm whining right now.

Most the night, last night, I couldn't sleep.  My head was turning, trying to figure out what is happening to my son.  The thought came to me that maybe he is having spasms.  Maybe there is an antispasmodic he can take, or a muscle relaxer so the food doesn't just dump right out of his system. I prayed in every toss and every turn and every waking moment that I would have wisdom and see what the right thing to do is.

First thing this morning, I had the thought that maybe his blood sugar was off.  I Googled if blood sugar issues can cause chronic diarrhea and pain.  Sure enough...it can.  In rare cases, this can be a symptom of diabetes before the usual symptoms even appear!

Is it a coincidence that that thought entered my head out of the blue?  Is it a coincidence that the question in my head led to various studies proving that this does happen?  I never would have thought about diabetes being linked to GI problems normally.  It seems so far fetched. It happens though!

I tucked that thought away and started my frustrating day.  

Later in the afternoon, I was getting ready to leave for visiting teaching.  I had been trying to find a quote the past couple of days for my lesson and have been unsuccessful.  Just before I had to leave, I tried one more time.  The phrase I googled was "Power from God".  The first article up on the LDS website was actually a story in one of the youth magazines.  It was about a girl who had been sick for months with chronic diarrhea and had lost 15 lbs in just a few weeks.  After much prayer, it was discovered that she had diabetes!!!

What is that?  Coincidence?  Twice in one day, I stumble into stories about people losing massive amounts of weight and it being attributed to diabetes?

I'm kind of stunned.  I know that somewhere, there is a blessing in this.  I'm not sure which doctor I can talk to that won't immediately dismiss my crazy thoughts.  I feel like I have to follow up on this.

Spencer has had a history of passing out, lightheadedness, shaking etc.  When he started noticing his weight drop on his mission, he also passed out for no reason in his kitchen one morning while making breakfast.   Every time this kind of thing has happened before his mission, I always made him eat a little something with sugar or drink some juice.  It seemed that that would fix it.  I always made sure that he had a good protein snack when he went skiing or to the gym because he would get so sick so fast.

Maybe it's nothing.  Maybe it is just a coincidence.  But what if it's not?  I know it sounds crazy.


Ahh...I know that we will be led along and I hate myself for getting so upset when I know for a fact, we are in God's hands.  I guess that makes me human....and that is really too bad.

I want to end with a quote from William Robert Anderson.  He took the submarine Nautilus under the North Pole from the Pacific waters to the Atlantic.  On the control panel of his sub, he had the following, "I believe I am always divinely guided.  I believe I will always take the right road.  I believe that God will always make a way even when there appears no way at all."

I needed to be reminded of this...we will be divinely guided.  I wish it wasn't so hard to remember this.


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Don't Panic

For the past three hours, my mantra has become...Don't Panic!

Spencer called me tonight around 10 pm after I got home from a long, long day working, to tell me that he has lost more weight.

1.5 weeks ago, he left home weighing a whopping 114lbs.
Saturday, he weighed 110 lbs.
Monday, he weighed barely 109 lbs...right after he ate a 2lb burrito...so he probably weighed more like 107.  Ugh.

He is becoming alarmed.  I was alarmed back at 119 lbs. Now, I'm just trying not to panic.

At this point, I think it would be stupid for him not to get a feeding tube.  There comes a point when it becomes impossible to eat enough calories to stabilize let alone gain 30 pounds back.  We are just about at that point.

He will need to eat at least 2500 calories a day to maintain his weight.  2500 calories of real food, not a 2 lb burrito from a fast food joint that probably doesn't even contain meat, just a bunch of fillers.  Doing a continuous feeding through the night will boost his calories so that he doesn't have to eat so much bulk that fills his stomach and creates pain.

Of course, he isn't adopting this plan very readily.  No one wants a feeding tube.  Especially a 21 year old boy just trying to live out his dreams.  If this happens, it would be a peg tube in his stomach so no one would even know it existed.

I don't know what to do...  Call the GI doc in about 6 hours and hope he has some answers.

As I talked to him, I felt like we needed to make a plan.  Sometimes, plans just give you peace of mind that you are doing something.  So, the plan Spencer came up with was to drink protein shakes all day long...as much as he can tolerate.  I am going to order a case of Ensure Clear- a juice that packs a wallop of calories in a small amount.  I will also come up with some things he can easily fix that have a million calories without a lot of bulk...like adding butter and coconut oil to everything!

It's going to be a stressful week.  He is planning to come home next Monday night because he has doctor appointments back to back on Tuesday.  I almost just want to cancel them.  We meet with the pulmonologist to get his PFT results.  I don't think I will be able to handle hearing that he too has pulmonary AVM's although it's dumb of me to assume he will be normal either.  It's starting to feel like too much.

On a side note...I think I feel too much.  I think I am way too much in tune to the interactions I have in a day.  I think every interaction I have is calculated for my learning and my growth.  This morning, I ran into the grocery to grab a treat I was taking to an acquaintance who I knew was having some trials and such.  A lady was standing in front of the stuff I needed so I asked her if I could grab something.  When she turned around, it was an old friend from years ago!  She use to come in and help Sam with some developmental stuff when he was a baby.  Her husband passed away two months ago from a lingering illness.

We talked candidly about her new situation, about being a caregiver, about dying, about death...she told me that the cause of death was Anorexia.  He weighed 109 lbs.  In reality, he died from a disease that was far from anorexia but as it goes with disease, a person often ends up being too sick to eat and weight loss happens with almost every fatal disease.  I think it's unfair to list anorexia as the cause of death...it was kidney cancer that killed him!

Maybe it was a total coincidence but the truth is...I can't stop thinking about that.  Sometimes, I am easily spooked.  I wish it wasn't so.

I will get maybe a couple of hours to sleep tonight and in the mean time...don't panic!


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Sunday, September 20, 2015

I could care less

Something magical happens in your 40's  or maybe it happens when life is too hectic or filled with chronic problems, or maybe it happens because we finally start to  grow up and'get it'.  Whatever 'it' is.

I have found that I could care less sometimes...

I care less about deadlines.

I care less about gossip.

I care less about judging others...myself...God.

I care less about your business.

I care less about being happy.

I care less about the mean people in my world.

I care less about the passive aggressive people in my world.

I care less about what you think of me.

I care less about what I should be doing.

I care less about what I could be doing.

I care less about a clean house, a tidy yard.

I care less about being my best.

In all of my caring less...there is room to care more.

I care more about doing what I can whether it meets a deadline or not.

I care more about the quiet battles of people around me.

I care more about just trying to understand myself, and give others and God that same degree of effort in understanding them.

I care more about my own business and less about yours and even less about God's.  All I can manage is my business of trying to live a life that God intended for me to live.  God's plan is underway and caring about his business only complicates mine.  What you do with your life, is your business, not mine...thank goodness!

I care more about being real.  Authentic.  It's been over 40 years of trying to figure this out. It may be a happy day, or it may not be but it's going to be real...that's for sure.

I care more about the people who can empathize than the ones who take every opportunity to judge and harass me with their judgments sprinkled with falsettos of support and kindness.

I care more about what I think of myself

I care more about enough. There will always be shoulds and coulds.  I'm working on enough.

I care more about doing my best...that's different than being the best.

I have found that life is so full of everything.  There are so many places to put our cares. The older I get, the more I realize, I can't care about everything or everyone.    I have wasted so much time checking outside of me to the vast buffet of life instead of checking in every now and again to see how things are going inside of me.

I have to admit, I don't always like the things I find when I check in with myself.  There are feelings so seemingly contrary to the person I think I am or at least, perfecting to be.  There are fears that can roar so loud, I hear nothing else.

I'm learning to accept what is.  Let life carry me along as I continue to learn, grow and care less.

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Friday, September 18, 2015

This journey

I have spent an awful lot of time in the car today driving back and forth from the hospital and doctor's which gives me a lot of time to think.

First of all...we lost another sweet friend from Cardio Pulmonary Rehab this week.   There was a lady there who was so taken with Shelbie.  They hit it off right away.  Her name is Marty.  They would do their exercises together and talk about everything under the sun.  The past couple of months, Marty has been gone doing family reunions and get togethers with her kids and sisters.

About three weeks ago, she ended up in the hospital with some heart arrhythmia.  She came to rehab the Monday after her weekend episode and talked about how much it scared her and she needed to work harder at rehab.  She hasn't been back since then and we've missed a lot because of all our stuff.
This past Sunday, Shelbie said to me, "I think maybe Marty died."  I didn't think so, she didn't seem that sick.  She acted as if things were going to be okay.  Well, she died on Sunday night!  Strange.  Her funeral was today and some nurses came in after the funeral and dropped off a program.  I was just praying Shelbie didn't see it.  I wanted to tell her in the car because I knew she would be upset.  She was.

I just can't help but think about life.  This journey we signed up for with full knowledge of how much suffering we would experience but how much joy too.  It's kind of crazy if you think about it, humans are pretty resilient creatures.

We met with our surgeon today and all three kids and their biopsies came back pretty good.  Quite normal in fact.  No cancer.  This is all good news if they weren't having any symptoms but they are still sick. So, that leaves us with the one thing our Gasteroenterologist was thinking...enteropathy.

Enteropathy is a disease of the intestines and becomes a serious and chronic problem in DC kids.  There is no way to fix it.  Because DC is a telomere disease, any place where cells have a high turnover rate, it is prone to disease, dysfunction and failure.  The gut is one of those places where cells are being replaced at an astounding rate...those cells can not be protected by the failing telomeres so...you end up with kids who can't absorb nutrients, digest food properly or eat without pain and a great deal of discomfort.  My kids.

At home, we are trying to stick to water soluble foods and eat frequently but for Spencer, it's not going so well.  I talked to him tonight and he is worn right out.  He has been working 13 hour days with a 13 hour school day in between.

Sigh....From here, we just continue to have hope and faith that somehow in spite of this, the kids can continue to do the things they love to do for a long time to come.  In the literature, it says that sometimes, patients can find a food that settles better than others and reverse the malnutrition and failure to thrive.  I sure hope we find that place!  Any chance it's on Easy Street?  Probably.


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Thursday, September 17, 2015

Every Thing

So, we are trying to find our new normal now.  Spencer has been gone a week and while it's still weird and wild, we are adjusting.  I'm not so sure he is but I guess that is to be expected.

Today was his first day of school.  One teacher didn't show up and another seemed to have no clue what she was teaching and he's on a waiting list for a class he really needs and the teacher said he wouldn't decide until next week.  If he doesn't get that class, then he will probably have to defer until January because he won't get his Pell Grant without 12 credits.  There are no other classes available that he can take.

Sometimes, I wonder why everything has to be hard.  I get that some things have to be difficult so you learn patience and whatever.  When every single thing you try is always hard, all the time...it gets really frustrating.

In my head, I get it.  My heart is another story.  I'm really ready for something easy.  Hmmmm, seems I've been looking around for easy since the beginning of time and apparently, I am still stuck on the corner of unclear and vague...I just need to find my way to Easy Street!

Spencer tries so hard, harder than anyone I know, to be positive and look on the bright side but when I talked to him tonight, he wasn't doing a very good job of hiding his struggles.  Still, he wouldn't give in to his frustrations.

In other news...We get biopsy results tomorrow!  Here we go again, praying for something easy like H-pylori as Shelbie's rough GI problems as opposed to something like cancer.  Those nodules were there and though they didn't scream cancer or inflammation...they were not recognized.  She has had H-Pylori and I have never felt the medication fixed the issues so that's why I'm leaning towards that.  Her entire stomach was full of little ulcers.  We well see.

Sam continues to hum along.  Some days better than others.  If I really get after him for moping around, he perks up for a few hours but then gets quiet and sad again.

Man... every thing is hard right now.  Doesn't help that I got sick at work tonight!  I came straight home and have been miserable all night!

Here's to pressing on, pressing forward...keeping up the good fight!


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Sunday, September 13, 2015

When You've Said it all...

 "What do you write about when you feel like you've said it all?" 
                                                                 -Jensen Parrish

Sometimes, I feel like that as well.  Especially lately.   What can I say that hasn't been said before.

Life is hard.
Life is good.
Life is crazy.
Life is a journey.

We carry on.
We stumble on.
We hope on.
We despair.

We do it all.  We do it together.  We journey on in this crazy, hard but good life.   We aren't always at our best or graceful as we stumble on with the load of cares we carry.  It could be worse...but it could be better.  It's a little of this and a little of that. An eternal round of line upon line, live and learn.



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Saturday, September 12, 2015

The Heart of a Mother

As a mother, we sure are called upon to do some hard things!

As I look back over the last little while, I am struck by all the hard things I have had to do and continue to do.  I am especially surprised that I let my son leave for two years.  I didn't realize, during the two years, how much of an impact it was having on me.  When he got home, I felt this incredible release of anxious energy.  I may have even suffered a little PTSD without realizing it because now that he is going to school, I am having waves of anxiety about him being gone...again!   I hate it.

As our saga continues...Spencer was accepted to school but due to a bad housing shortage for students, we have been unable to secure a place for him to live.  He also didn't have the job he was counting on.  

He's been so patient and working his faith that things would turn out but it was also weighing heavily on him.  After doing a lot of networking, coming up with a plan, we headed down to Salt Lake on Friday to do more house hunting.

The whole way down in the wee hours of the morning, I kept wondering why I was doing this for him?  If I find a place for him to live, it just means he is gone!  Moving on and moving out!  Why would I do that?  Why do I do half the things I do for my kids?

Everything I do is for their happiness.  Everything.  I can't think of the last time I did one thing that made me happy.  Just me.  I guess you could say that doing things for my kids makes me happy, it does.  You could also say that doing things for my kids makes me so very sad.
Spencer's new home sweet home.  At this point, we had no clue what the inside looked like but as always...we grin and bear it! 

Friday, after spending a few hours in search of housing, we secured a lovely little home outside of Salt Lake.  He also secured a full time job, just 5 minutes from the little house.  We rented it without even seeing the inside.  What kind of mother, sends her kid to a town she is not familiar with, to live with two other boys she knows nothing about!?

They could be ax murderers or worse!  They could be gamers!  They could be dirty, filthy slobs. They could be mean.  They could be drunken bums who party with cocaine and crystal meth!

All day, I couldn't figure out why I was trying so hard to make him happy and have all his plans work out when I could so clearly hear my own heart breaking with each success?

I'm tired of this mothering gig.  I really am.  The joys are so intense but so are the heartaches.  It's a pretty crazy job when you think about it.  The range of emotions can swing wildly from one to another or even better, they come all at once.  This is when you laugh and cry at the very same time and nothing you do will stop either emotion....That may or may not have happened yesterday.

Spencer decided that since he has to be there all weekend for his friend's wedding where he will be acting as a groomsman, and school starts Monday, he will just stay there.  Shelbie and I came home and we will pack up his bedroom and his dad and I will deliver it all to him tomorrow.  I'm sure that will be another hallmark day in the life of this mother!!

In reality and all sarcasm and bitterness and resentment and fear and anxiety and fatigue aside...

His new house is going to be fine.  It is owned by a responsible family who lives in Virginia or somewhere far away.  Their son is living there and he just returned from his mission 2 weeks ago and will be attending University of Utah.  The other boy living there is also a recently returned missionary.  They are supplying him with a private bedroom, a bed, all the kitchen stuff, washer and dryer etc.  The interior has been completely remodeled with new cabinets, flooring and granite counters, so, it seems like a great set up.  

Both Spencer and I felt strongly that it is the place Heavenly Father prepared for him.  Spencer is excited, he said, "This place is amazing and 100% better than anything I lived in the past two years!"

Spencer met the young man who 'owns' the house and will be his roommate.  He is nice looking, active in sports, and seems like they will have a lot in common. I doubt that Spencer will be there very much.  He will work full time Monday, Wednesday, Friday and some Saturdays from 7-7.  On Tuesdays and Thursdays he will be at school from 8am til 9pm.

I continue to fret about Spencer's health.  He is still sick, in fact nothing has really changed.  He eats, he gets sick.  Some days, it's better than others and the diet has been helpful and eating more often but with his schedule, I know he isn't going to stick to the diet.  No 21 year old on earth is going to come home after work or school for 12 hours and make a healthy, water soluble meal.  I don't see any way for him to be eating every 2 hours either, especially at work.

I placed him squarely in the hands of the Lord once, I will have to do it again.  But man...this is harder the second time around.

I don't know how I continue to keep doing these hard things like letting my sick kids go!  I've basically decided that I am no longer going to try to make them happy anymore.  It's all about me from here on out! So...take that you darn kids that I love too much!! ;)



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Wednesday, September 9, 2015

We've all gone mad

There is a major element of 'crazy' when your entire life is up in the air.  A kind of crazy you really can't do anything about and well...that's just crazy!

The entire situation with Spencer is all encompassing.  I didn't realize how much time it would actually consume.  Aside from his health issues, we are dealing with life issues.  He's been trying to get into school, which he actually was accepted.  So, now it's been trying to get registered at the 11th hour with all of the prereq. classes required are filled, find housing and the job he was 'expecting', 'promised', whatever that was, is looking more and more like maybe it won't happen.  Without a job, or a place to live how can school materialize.  Classes start in 5 days!!  5 days people!  We have 5 days to find a dwelling in another State, get an apartment outfitted, beg all the teachers to let him add the credits, figure out how to pay for an apartment, school etc.  find a job...in 5 days!  Yes, we are going mad, and we need a miracle or two.

I've been networking like crazy for housing options.  Today, we spent no less than 6 hours trying to get registered, find scholarships, pell grants, blah, blah, blah.

My inside voice tells me this is ridiculous.  Nothing is going to work.  This must not be the right plan if it all has to be so hard....

My spirit is saying...be patient.  Let the plan unfold.  Trust in the Lord...  It's easy to say, hard to do all the time.

We just don't know what the right thing is.  I am trying to let Spencer run his life and decide for himself.  It's definitely a stress that is getting to him.  If nothing works out, then he stays home and tries to find a job here and come up with a plan b.

In my head, I think he needs to stay home while we get on top of the health issues.  He is doing only slightly better.  I asked him yesterday on a scale from 1-10 how he is feeling compared to the night he ended up in the ER and he said he was at a 5 or 6.   If 10 was the worst...this is better.

I've been ask if it's really a smart thing to send him off to live on his own, manage work, school, medical stuff, cook for himself- a special diet at that.  Well, It's not about what is smart and what is not.  I have always taught my kids to seize the moment. Life life the best you can.  Sitting around at home waiting to get better or get worse seems so unproductive.  We have to keep moving forward.  Moving forward in faith...

So, in the meantime, while we wait for a plan to come into focus, we try to maintain our sanity.


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Tuesday, September 8, 2015

Happy Birthday Spencer!

Today is the big 21 for Spencer!  21 years has flown by!


          Spencer 2 months old                                            Spencer and I July 29, 2015
Colorado




Grand Teton National Park


One of my favorite pictures of Spencer and I.  He was 9 years old in this picture. 


So, funny story...quite some time ago, I think Spencer was probably about 8 or 9 years old, someone had convinced me to take the kids to this alternative health 'doctor'.  Back then, when we were still in the early stages of disease, people offered up all sorts of ideas that would cure my kids and we bought into most of them.

We drank the rare berry juice, took the nasty herbs mixed with dirt and let them sit under our tongue, ( just kidding, it only tasted like dirt)  We slept on magnets, wore magnets, lived and breathed magnets.  We soaked in oils, drank oils,  We did it all.  This particular one though...was the most extreme.

To this day, I don't know really know what she was trying to accomplish but she had this long, crystal wand.  She would have the kids strapped into this chair and then wave the wand in their faces and tell them to think of negative things.  Then she would get all crazy waving the wand around, pulling the negativity from them. The kids called her 'The Wand Lady'.   I called her crazy.

After each session, we went home and the kids would be violently sick- vomiting, fever, diarrhea.  It happened after every time!  On one particular visit, I told her that I didn't think we would be continuing since I saw no improvement and in fact had to deal with extreme sickness, even dehydration.  She said, "Well, that's because it's working to get the disease from them.  Your son is traumatized over his birth experience.  That's what's wrong with him."

Yep...right then I figured she was nuts!  We didn't even say goodbye...I scooped up my kids and we left!

She was right about something...it was a traumatic birth but more for me!  That kid didn't want to come out and then at the last minute came all at once!  The doctor literally ran through the doors and caught him before scrubbing up or anything.

He's added a dimension of surprise for the past 21 years; starting with that red hair of his!

He has accomplished things I had no idea he was capable of.  I have always compared Spencer to mountains.  He loves climbing mountains, skiing off mountains, flipping off mountains...but most of all Spencer moves mountains.  He has a tenacity and determination that is pretty impressive.  Serving a mission for 2 years, more often than not, he was sick, as I have come to find out, but only missed about 3 or 4 days of work in two years.  He just pushes through.

When he decides what he wants to do, he doesn't give up finding a way to make it happen.  I love that about him.   I love that I have adult children.  I love that we learn and grow from each other more as equals than as parent and child.

So...it's been a surprisingly, great 21 years!  Here's to another 21 years or more of pure joy, happiness and surprises around each bend.

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Sunday, September 6, 2015

The War With What Is

Each year, I feel like I am led to someone who inspires me so much, their words and their thoughts seem to get me through the hard times.  It's as if they have been divinely appointed to help me through the hard times.

The year I lost my job, it was The Course in Miracles that I had spent a full 6 months studying.  I was so intrigued with this book.  With each inspiring podcast I listened to, I learned so much more about my faith.  Later that year, Shelbie ended up having chemotherapy and the things I had previously learned, helped us get through that.

Last year, it was Brene Brown and her theory on owning your story, learning to be vulnerable.

This year, along with inspiring messages from the leaders of my church, I am so interested in the work of Byron Katie.  Her messages on suffering and trials are timely for me.  She speaks volumes about how the suffering we feel comes from our own thoughts and our own resistance.  When I heard her speak the statement...The war with what is...It struck me.

This is so true.  When I am feeling strong and hopeful, I am controlling my mind.  I am trusting in God's plan.  I am not judging the situation we find ourselves in.  It's so easy when facing a chronic disease to get mowed down by the what ifs and maybes.  It takes no time at all, and hardly any energy to jump to conclusions and envision the worst case scenario.

As much as I would like to say that I have mastered my mind...I have not.  I have to keep convincing myself that everything is going to be okay.  That is exhausting and some days, impossible.

But at the same time, I am learning.  Slowly and steadily, I am learning to accept what is and keep my heart and my head open.

Our latest setback is being denied cardiac testing for Spencer.  Even though, it was requested by our Pulmonologist who found obvious problems with Spencer's lungs and the fact that his siblings have holes in their heart and lungs; the insurance company said, the testing was not relevant.  Not relevant.  What does that even mean?  How is it optional for an insurance company that I am paying privately for to just decide if my child receives treatment?

Nevertheless, I have been teaching my kids to seize the moment and they are trying so hard to do that, even on days when they find it hard to get out of bed. I have been coaching them to find joy in the journey, trust in the plan and all those other adages we tell each other and ourselves...so...getting upset about the insurance issue, it not an option.

We will stay the course, try to accept what is. The truth is, there is a part of me that is sort of excited to see how things are going to unfold.

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Saturday, September 5, 2015

This means war

It has been a hard week but for some reason, yesterday was about the hardest day. I felt like I was going to 'snap' all day.  It was as if every single person I have ever associated with needed something from me.  My phone was going non stop, the kids needed me, and a project I offered to 'help' out with and thought it would be an hour, turned into 8 hours.  Needless to say, I am terribly behind and feel thin as I spread myself across all the needs to fill.

We are three days into the diet and it is going okay but it is definitely far from better.  The truth is nothing is really going to help.  It only becomes the difference between horrid pain and significant pain and discomfort.

Last night, I could feel a major breakdown coming.  It has just been too much for too long.  I don't understand what is happening to my kids.  We were fine one minute and not the next...or so it seems.

But...then I remembered that each step we take, each trial we get through has prepared us and taught us for the next big thing around the bend.  We are at the next bend.  It's time to apply what we have already learned.

In a sense, we are embarking on a battle.  This situation is a war of the mind.  A war between hope and despair.  A war between faith and fear. I don't want all our past trials and learning to be for naught.  I want to be more graceful and submissive as we enter this stage that seems so impossible to survive.

Just like the battleground, we can only guess at where the next hit is coming.  We can only estimate the mind of the enemy.  The disease is the enemy but part of the problem is also trying to understand the commands from the General- God.  I try to see what he is doing with his walking wounded (us) but then it seems everything I thought was going to happen doesn't.  It's human nature to want to plan for the future.  In war, everything is in question. In war, there are no promised tomorrows.  Nothing is as it should be and the twists and turns can make no sense at all.  Time is spent in course correcting...constantly.  That is hard work for the mind.

In battle, you have to be on guard.  You have to take a step, wait, watch, listen and hope some directions come through.  When they don't, and night falls and you are all alone on the battle field, you take another step and hope and pray like crazy you survive the hidden land mines.

Since Spencer returned from his mission, his plan was to got to LDS Business College in Utah and get a job at a car dealership that his Mission President owns.  That was a great plan but nothing was working out to that extent.

The high school lost his transcript not once but three times.  One time, they sent it to the wrong school.  He had problems getting leaders to co operate in getting his endorsement interviews done in time.   Then...let's not forget he has spent the majority of the past two weeks in the hospital!

Yesterday, was the school deadline and by 5 pm, he had not heard if he had been accepted, in fact, they said it would take them 4 weeks to decide if he could even be accepted but, school starts on the 14th.  And...student housing is completely full and he has not been able to find housing alternatives.

Yesterday was also the date planned to have the job interview- it was suppose to be just a formality.  Well, they said they didn't have a place for him as a salesman.  They said they would have to meet to see where they could put him.

Still...Spencer had hope.  Still...I had hope...at least everything I told Spencer was full of hope.  I told him to wait upon the Lord.  To trust that a plan will unfold and he will see the next step to take.  I told him not to think too far into the future.   I told him to just carry on, doing the needful thing.

My inside voice however...felt strongly that this plan to move out of State was not what he should do since he is so sick.  I felt like he needed the rest of this year to resolve some of these physical issues.  After all...he is down to 114 pounds!  Nevertheless...I was anxious to see what  exactly Heavenly Father had in store for Spencer.

There is this constant pull, from panic to peace and back to panic.  It is truly a war to keep your mind from going to dark places where there is only one lone survivor.

So...in my mind, I was sure he wouldn't be leaving.

Last night, at 10pm, he texted me an exciting message that he was accepted to school!

And so goes the war in my head...now what?

I don't know how this kid is going to go to school...with our without a job!  I don't know how he will have the energy to do both.  I don't know how he will manage to cook a special diet of food for himself.  I don't know how he will keep up on eating every two hours.

I have no idea what the Lord is doing with us!  It's a  crazy feeling to be tossed about, completely unsure of anything.  It's a war.

I want to be positive and hopeful.  I want to trust that my kids are going to make it through this rough patch...that I will make it through...but there are moments when I can't....even....breathe.  And today, I am remembering when the trial was so much easier.


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Friday, September 4, 2015

Some results...

I can not even believe how completely insane life got around here in the blink of an eye.

I have two sick kids and one horribly depressed kid who is also sick but doesn't know it.  I mean, he isn't in too much discomfort so he carries on, none the wiser.

Results are starting to trickle in.

First, bone marrow biopsies.  Only preliminary results are back, more are pending

Shelbie:  Remained stable with no signs of leukemia or myelodysplasia.  Of course she was neutropenic, leukopenic and had no iron stores but that is pretty typical for her.

Spencer:  For the most part, is stable.  He too is neutropenic and he had some cells called hematagones.  They can actually become fairly serious but for now, they have classified it as slightly increased, not significantly increased so, I guess they aren't very worried.

Samuel:  Not stable.  He lost around 5% of his cellularity so his marrow is very, very empty.  He too was neutropenic, leukopenic and he had something very strange called cytoplasmic blebs.  I realize that sounds completely made up!  Blebs is a real thing.  It is when the nucleas of a cell bulges out.  I'm not entirely sure what this means but in some quick research, it can be related to the arterior venous malformations creating pressure in the cells.

For now, we are not going to worry about hematogones or blebs.  We will wait for the remaining bone marrow studies but I feel pretty confident that we can breathe easy for another year.

Spencer continues to suffer incredibly with malnutrition, eating, nausea, and other unmentionables.  It's been so hard to see him waste away and be so weak he can hardly function.   Our GI called on Wednesday afternoon and said that it is clear that Spencer has a functional problem with his GI tract- from his stomach to the end of his colon.  He feels that the entire length is becoming paralyzed to some degree. It remains to be seen if this is due to his mitochondrial issues or DC.  He has been doing some DC studying and he feels like this is the progression of the disease.

Sam is also having GI problems but not the extent that Spencer is.  Again, since his colonoscopy was clean, it is a functional problem.

Shelbie is so sick and getting sicker. I really hope we get pathology back.  Her stomach is a mess and those unidentified growths are making me freak just a bit.  Our GI thinks they look like Lymphoid Nodular Hypoplasia.  Don't ask me what that means and to be honest...I haven't gone there.

We are trying to be patient as we wait for a game plan.  The doctor suggested starting the kids on a soluble fiber diet and making sure they eat every 2 hours.  This is proving to be a time consuming venture but we will stick it out.  Today was our first full day with the diet.  I am still trying to learn all about the right foods to try with him.  Spencer also started some pre-digested formulas and that was slightly better and going down than anything else.  So, I think we are on the right track but it is sad to think this disease is running its course...without my permission!


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