Friday, February 26, 2016

Broken and Bent

Today is a hard one.

Maybe it's the broken car that kept dying in Utah and is dead today.
Maybe it's the way my schedule bends under the pressures that I face this weekend with work.

Regardless...today, I feel broken and bent.

This week has contained 48 hours of the most intense experiences, reflections, and moments.

Heaven has been closer than I could have imagined but in the next second, light years away.

My mind is trying to find a way to escape this.  I look behind me and see sorrow and suffering catching up.  I can not dodge this and I see that more than ever today.  I want to dodge it.  Run away. There must be something I can take to escape these feelings that overwhelm me today.

But then, I heard a phrase...An opportunity to bend.

I remembered...today, is an opportunity to lean into God a little more than I have needed to.  Bend, to reach his reaching.  There is no other way.  I can cry all I want.  I can throw the most amazing pity party but that isn't going to change what we must pass through.

So, I have no choice but to open the gate and walk in to my own garden where broken hearts go to feel the balm of Christ's healing.  There is so much more to this than one can imagine; than I imagined.  So, it goes.



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Wednesday, February 24, 2016

A new path

A very long day at Huntsman Cancer Center.

It was surreal sitting in the hospital.  I sunk down in a cozy seat of denial.  Even two hours into the appointment, I was sure Shelbie didn't have cancer.

I have been talking to Shelbie about trying to take on a little more responsibility in her own care.  It's time she start finding her voice and expressing her needs.  That experiment started today.  Her dad and I let her go back alone for the blood work.  It was hard.  So hard.   They had to take 13 tubes of blood!  Of course she did fine.

I really loved our new doctor.  He is from Lebanon and has the best bedside manner and sense of humor.  He is quiet and then just interjects a joke or sarcasm, completely out of the blue.  Totally our type of doctor.  It felt amazing to be listened to and not brushed off as being crazy, dramatic or making stuff up.  He was kind, gentle and very much like our doctor from Seattle.

Prior to seeing him, we saw a Fellow.  He too was very impressive.  He too listened and was so patient.  There was a point when Shelbie got a little emotional and anxious and he just let her have a moment.  He left the room to let her process things for a minute and then came back in.  He said, "Shelbie, I know this is all really hard to talk about over and over.  I appreciate your tears.  I can understand what you must be feeling and I know it feels weird to cry in front of a doctor but I am glad you felt you could be honest with your feelings."

I have never heard a doctor say that and it was very tender and empathetic.  After awhile, I wanted to ask him if he was from Canada.  I had no reason to ask that but felt impressed to.  It turns out he was born in the same town as me and we lived a block from his uncle!!  His grandpa's brother was best friends with my parents!  It's unbelievable really!  And...his aunt's daughter is my sister's friend!  This is the third time we have been led to a doctor who has ties to our family.  I am so astounded by this.  It blows me away.  One doc was even found all the way in Seattle!

He believes it is possible that Shelbie has a rare cancer of the lymphocytes BUT until more tests are done, he can't say for sure.  She has most of the hallmark symptoms of cancer- pain, nausea, night sweats, day sweats, enlarged liver, enlarged spleen and atypical and large lymphocytes, increased monocytes.  The name of cancer he suggested was the very same name that Dr. S suggested three weeks ago.  I found that interesting.  He is also planning a conference call with Dr. S in Boston and Dr. Savage at the National Institute of Health!

Our new Oncologist also wants to bring on some other specialists since this is so complicated.  So, we will be meeting those new docs in two weeks as well as our Cardiologist.  He said he has spoken to the Cardiologist and they feel strongly we need to address her heart situation and those faulty valves.   He also feels there is an underlying genetic disease that is attacking all of her organs.  He has some ideas of what that might be and after listening to the symptoms, it sounds identical to Shelbie.

So, the plan is this...We will be here at least another day or two.  She has some more testing to do including a PET scan and some flow cytometry testing on her blood and some specific bone marrow failure testing that I have never heard of before.

In two weeks, we come back to meet with him, and three new docs and get results from the PET scan.
Shelbie is doing so well all things considered.  I did really well today as well until about 7pm and I had a little fall apart.  It's been a long, hard day.  Oh...did I mention my car died while sitting on a steep hill at a red light, 10 minutes before our appointment!  I'm so sick of this darn car but I really can't afford a new one.  It's 10 years old and nearly 200,000 miles!  Anyways, that was more frustrating than anything.

My biggest feeling tonight is anger.  I'm angry with myself and angry with our provider at home.  I am so angry that for over a year, they have done nothing but blow me off.  We have always been accused of worrying too much, even suggesting that I just want something to be wrong with my kids; making mountains out of molehills!  It has been so hard, that I stopped taking my kids to the doctor because I couldn't stand feeling like they just looked at us as a big joke.  I have become embarrassed to even admit the kids are sick.  They never took Shelbie's complaints seriously.  So, now we are a full year later and these are problems that should have been addressed last year.

I felt like a totally incompetent mother when the doctors today kept saying, "So, when they found nodules in her lungs, who did you follow up with?"  No one...because I was told I worry too much!  I hate seeing a doctor's jaw drop when I admit I didn't follow up.  It's going to take me a long time to work through these feelings of guilt and shame.

If I never see our specialist back home, it will be too soon.  A doctor should never make you feel like a loser!  Never.  They shouldn't have a license if you ask me.  And...I hate myself for feeling that too.

 Tonight, I'm struggling.  An hour ago, I was fine. Having a really hard time as I process the gravity of this.  Even if we dodge the cancer bullet...her body is breaking down and her organs are not in good shape.  We are in a very serious situation.

Despite those struggles, I know that God was with us today.  I know that we were led here and this is where we need to be.  I know he will help me work through the dumb car issues, the jobs I am bogged down with, the focusing problems I am having and even  help me find peace in the discord I am feeling for the doctor that I put all my trust in and he chose his ego over being a doctor.  And...I know he will take care of Shelbie.

PS...Sam and his group did such a great job on their presentation, the Mayor asked them to present their idea for updating the crosswalks in our city to the entire City Council!  I am so proud of him for working so hard and doing his best.

Well...more tomorrow as this story unfolds. Thank you so much for the prayers and concerns.  It means a lot to me.

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Tuesday, February 23, 2016

Oh The Places You'll Go

I did not sleep well last night...Dr. Seuss was looping through my head. All. Night. Long.

Oh, the places you'll go...How in the world did we get here?

It's so hard to believe that Shelbie was once so small!  So innocent.  I love this picture of her when she was two years old.  It was taken just a couple of weeks before her first major seizure which left her unconscious and her first ambulance ride, and  kicked off 6 more years of multiple, major seizures... and a picture taken just a month before Spencer was born.  It's a picture that marks the start of her platelet and immune issues, though at the time, I had no idea the gravity of it all. It's a picture that speaks volumes, a thousand words of what we were in for.  In two years she had already endured much and had already experienced a quick trip to the other side of the veil when her heart stopped at just two weeks old.  It hasn't been an easy life for this girl of mine!


In 2009, after 9 months of chemotherapy in 2007, she was asked to sing for the survivor's lap at Relay for Life.  I was asked to speak at the event about trials and adversity and she followed with a song called, Ordinary Miracle by Sarah McLachlan.  I adore these pictures of Shelbie.  I love those eyes that shine!  That smile!

 

Here we are...still surviving!

This girl is beyond me in strength and courage, hope and light!  I look at her with the deepest reverence a mother can have for her child.  I don't even see anymore as my child.  She is MY ordinary miracle.

So...here we go.  I like to think I know what is going to unfold for us in the next 24-48 hours and beyond, but we are stepping into dark places.  Scary places.  Holy places.  Sad places.  Crying places....We have been led to...GREAT PLACES!

“You're off to Great Places!
Today is your day!
Your mountain is waiting,
So... get on your way!” 
― Dr. SeussOh, The Places You'll Go!

“You'll get mixed up, of course, as you already know. You'll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that Life's a Great Balancing Act. Just never forget to be dexterous and deft. And never mix up your right foot with your left.” 
― Dr. SeussOh, The Places You’ll Go!

“And when you're alone there's a very good chance
you'll meet things that scare you right out of your pants
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.” 
― Dr. SeussOh, The Places You'll Go!

We are ready for the next mountain that stands in our way.  I know we will be mixed up, confused and maybe even lost for a minute or two but we will find our way back to where we need to be. I am already scared out of my pants and don't know how I am going to get through this.   Already this morning has been hard.  I had a presentation a little earlier and another one coming up.  Shelbie left early with her dad and I will be leaving later, after I get Sam situated.

Ahhh...Sam.  The timing of this is crummy.  He is coming apart with a major presentation he has to make at school.  It pretty much determines if he graduates or not.  He has been stressed and extremely anxious.  He can't even focus on anything else and now I have to leave him all alone!  I'm so upset about that.  He presents in the morning so if you have room for some extra prayers, he could use them.  This learning disability he has to deal with doesn't make things like this easy at all.  He's pretty upset and vulnerable right now.  I just wish we didn't have to be separated at a time like this.

I will be happy to see Spencer.  Emotional, if the truth be told. He started back up on the vancomycin today for the C-diff, and really hope he can feel better soon.  I will have to assess him while we are there and see if there is anything more I can do for him.

Here we go...wish us luck.  Someone asked me what they should pray for...Pray for the doctor.  Pray he has wisdom.  Pray he listens to the spirit.  Pray for Shelbie to be strong, accepting, courageous, brave...Just pray for my kids to be held tightly in the arms of their Savior and God.  That's all.  I don't even really care if God fixes this at all...I just want them to be safe.
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Sunday, February 21, 2016

Here and There

Well, another week of waiting has come and gone.  I have continued to try hard to see the blessings amid the struggle.

Last week, I was asked to be the chorister in church.  I wanted so badly to say NO.  It's not that I don't want to serve but it's very hard for me be in large groups of people anymore, let alone standing up in front of a crowd doing something I haven't had that much experience in.  Not only that, the stress of trying to find a substitute if I have to be gone seemed more overwhelming than anything else.  I find, it's the little things that are sometimes harder to deal with than the big obvious things.

When I thought about doing this, I ended up swimming in a pool of anxiety and panic.  A number of times I picked up the phone to call and back out gracefully.

Today was my first day 'on the job' and I was not feeling joyful about it.  I sat there before the meeting started and a lady approached me.  She said, "Kathy, I had an experience with the Spirit this morning.  I need you to know that I will be available to take over for you at a moments notice if you ever have anything come up and can't be here.  Even if you call on me 1 minute before the meeting starts...I will be here to help you.  Is everything okay with you and your family?"

She had no clue what was going on with us.  Just another little reminder that God is mindful of our needs.

Shelbie has been having a harder and harder time with symptoms this weekend.  Today especially, has been harder for her.  She can hardly stay awake, she is in more pain and suffers from a lot of nausea and I think she has a fungal infection starting up.  I reminded her that for weeks while we waited for these appointments to get set, I think God sustained her health.  She has kept up a busy work schedule and has done many great things. I'm so glad she hasn't been suffering all these weeks.

All in all, she is doing well.  Just ready for answers.  All in all, I'm doing well.

I still find myself panicking over things going on my little worldy world here, yet calm and peaceful when I can tap into my spiritual world. One foot here, one foot there. I would rather not get caught up in the fear of what is coming but it happens.  For now...I'm going to try to breathe and focus on the mountain of work I have to accomplish in the next 36 hours.



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Friday, February 19, 2016

Long Insights From the Past

Today marks the anniversary of the executive order placed by President FDR to incarcerate Japanese Americans just because they looked like the enemy.  This came shortly after the bombing of Pearl Harbor.   I have actually read a few books on this little piece of history and have found the entire situation completely fascinating.

There is no shortage of articles today, where you can read about the Japanese internment camps.

What really struck me hard today, was this article from NPR.  You can look at it HERE

The article is about three different photographers who captured images from the Japanese Camp Manzanar.

The first photographer invited to take pictures,was a social activist, Dorothea Lange.  The second was Ansel Adams and the third, a Japanese man who lived in the camp.  Their perspectives are fascinating.

The social activist, Dorothea Lange shared a visual tour of injustice.  Her images were harsh and showed rough conditions, dusty souls that had been misplaced by the very country they loved.

Ansel Adams portrayed a more humane side of the camp; individual personalities and activity.  A positive side of what life was like, or what he viewed their life to be like.  The instructions to Adams was that he could not photograph any barbed wire.

Finally, the man himself, who lived out each day in these camps, shared his view of life.  He himself had to smuggle in a homemade camera so that he could capture his own history.   After having his camera confiscated so many times, they decided to hire him to be the camp photographer.  He even ended up with a studio and took portraits of families and special events.

As I read this, it really hit home for me.

How often to we stand where we are, with our abridged view of someone or something, and look upon them with our narrow vision and personal knowledge base which becomes the measuring stick of judgement towards them?

What is it we want to see?  Do we ever try to see beyond our limited knowledge?  Are we ever open to the possibility that perhaps, we don't see beyond the razor wire and walls others build around their world to keep people from peering into more than a keyhole of space?

When was the last time, you heard someone voice a negative thought about an interaction they may have had and that became your view too?   Even more dangerous than that, allowed that one negative perspective to be yours, even letting go the different, even positive view who had once had yourself, of the same said person?

Why is this such an important lesson to be learned?

Well, because...It is.

In a way, I see myself as a person who has been placed in an internment camp of sorts.  Perhaps it's a place I put myself.  Perhaps, a place others put me and I went peaceably because I didn't know any better.  Perhaps, it's just the nature of living with a disease that is so rare and hard to understand and estimate.

I look back on my life and remember the days when I was attending college; so full of hope for the future.  I remember being a new wife, a promising life ahead.  I remember when the kids started arriving, how full life was.  I was finding my way.  A new chapter, a new me. I had responsibilities, a lot of them in church, in the neighborhood, the community.  I had friends, many friends.  I had a best friend.  I had a best friend that I spent every day with.  Our kids played together, we laughed together.  When we couldn't be together we spent hours on the phone. People saw me as having it all.

The perfect everything.  We were THAT family.  I was THAT mom.  I was THAT girl who had it all together and I had THAT perfect marriage to boot!

And...THAT...was good.

Except...THAT...wasn't the truth.  THAT was the view that I chose to let people see of me or honestly, the one they chose to see.

And then THAT happened.  Something terribly wrong with my kids and I came unraveled.  I couldn't find my way through the diagnostics of a life threatening sentence that was being handed us. Slowly, my world fell away.  Try as I might to hold on to what I had, it has slowly eroded.

Today, my life is sparse and bare compared to what it once was. There are few connections beyond the walls of my home.  We live with a disease that is not easy to connect to.  People don't see me as the person I once was.  They don't see me as a person of value, they only see what they want to see.  For some, it is the barbed wire of disease that keeps us at an arms length away because it is just too much; foreign from the normal experiences of life.  Too much to even begin to believe.  Others have measured us as having too much on our plate to do anything more.  For still others, they only see what must certainly be a sad and depressing tale.  For a very few...they see a happy family; a giving, grateful, eager to help and easily entertained in fits of laughter and joy, kind of family.

I guess we are all of this.  On any day, we are all of this just like the three views of the Japanese internment camps.  Some days, our plate is full, too full.  Some days our experiences take us to another dimension; another world many will never see let alone understand.  Some days, most days...we are happy.  We are making the best of it.  We are learning.  We are making mistakes.  We stand up, we show up.

The reflections of this go deep.  I wonder what it is I really want the world to see?  We may exist within an internment of disease and hard trials but there is more to us.  Far more than what your limited lens may see or size up.   Even more than my own lens can see.

It's about perspective.  Mine.  Yours.  I am going to choose to find a new way of seeing things this weekend.  I am going to think twice before I judge the day.  The weather.  The neighbors.  You.  And even me...I am going to think twice before I judge my own shortcomings but more importantly...God.


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Thursday, February 18, 2016

In other news

We are still in a holding pattern as we are down to 6 days before our big trip.  We talk about it like it's going to be some fabulous resort!  Ha ha...Nope, just a cancer hospital...full of answers I hope.  Shelbie has been working through a lot of pain and discomfort this week and sweats!  Drenching, horrible sweats.  She's a trooper though.

So, in between being spiritually bipolar and other things, lots has been happening.  I think I sort of jinxed Spencer.  I thought he was doing so well, he was doing so well but now it appears that C-Diff has arrived once again!  Rotten C-Diff.  He got sick, had to start antibiotics and...and, here we go again.  Then to top off his wonderful day, his car got towed, his debit card expired and I have the new one here so he doesn't even have money.  Meh...such is life.   We have some things to work through today!

I don't have many things in my house that I absolutely love, but I do love the picture frame that hangs on the inside of my front door.  Every few days, I switch out the inspirational quote.  This is the quote for this week.


It's important to keep our perspective this week.  Here's a glimpse of some of the other quotes I have that are waiting to find their way into the frame.


If my house ever burned down, I would miss these cards the most.  I know, I'm weird like that; pretty simple.

This week is another crazy Lupus week.  I have been tired like I have never been tired before.  My left knee is swollen like crazy and this morning, I broke out into hives.  What a joy!  But...I'm trying to remember, it will all work out.  A day of apple cider vinegar and more lemon juice with baking soda and I should be good as new tomorrow, or as good as a middle aged woman can possibly be.  I asked my doctor why this is happening and he said "Stress."
"I'm not stressed!"  I told him.  Ha ha, well okay maybe.  But that's where I get confused.  I feel like I've been handling the stress just fine, I mean, all things considered.  Oh well...I'll try to get my zen on today.

Finally, yesterday, I was asked to teach a group of women in another town about being happy in adversity.  I'm not so sure I am the best candidate for that but I can honestly say, I have tried to find some definition of happy in these trials.  There's happy, in terms of the world's view and then there is a different kind of happy from a more Heavenly view.  I think I am figuring out the Heavenly view of happy, obviously, still learning but I'm getting there.  I think I am slowly understanding that the Joy we read about in the scriptures doesn't necessarily mean it will be felt daily.  Neal Maxwell states that not one of our trials can be cut short here, because it would deprive us of everlasting joy there.

Have you ever thought about that before?

Anyways...Here's to a joyful Thursday as I hobble off to work.

Oh...I was asked to help write a book!  I'm pretty excited about that possibility.  We'll see how that unfolds.  Maybe it will set the fire under me to get my own finished that I started a long while ago.
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Tuesday, February 16, 2016

What will become of me...

I'm no stranger to people who have been through something big.  Big things like, staring down their own mortality or that of a loved one.  I have been privileged, in many cases, to share in their trial.  In many ways, I feel like this has been a gift from my Father in Heaven.

Lately, I have seen how certain people have been placed along my way to learn from.  It seems that there has been a steady stream of them.  I have been thinking about each one and what I can learn from them.

For some, I have found that they are meek and humble.  They don't draw attention to the struggles they have had.  They quietly go about their life and carry with them the hurt and suffering they felt from the past, in a tender wrapping of peace.  A genuine peace.  I like to think they are changed for the better.  They have a reverence about them that is nearly indescribable.  Something, I can be jealous of if I'm not careful.

There are some who show the wear and tear of life on their faces, in their attitudes.  They feel worn out and put upon. Little things become big things and big things become tsunamis of overwhelm.  They exist. That's about all they can manage. They are allowed to show how tough life has been for them, yet have little patience and empathy when someone else feels the same degree of toughness to life.

Some again, expect the world to make up for the shortcomings and losses they faced.  They seem to control everyone around them in a passive aggressive way.  They want pay back.  They think they deserve better and expect better and expect that nothing bad should ever happen again.  They become takers, not givers.  They take emotionally, mentally and physically.  When things get tough, you hear about it.  There is always underlying current that life is not fair.

I'm not judging any one of these people.  On any given day, at any given moment, I can see some of me in each of them.  It scares me.  I spend more time than I should pondering on this idea.

So, what will become of me...

I hope that I become better, not bitter from the lessons of life.
I hope that I will become stronger
I hope I will be meek, mild, humble...patient
I hope that I will become refined, graceful and grateful
I hope that I never disregard the stories of others
I hope that I become a beacon of light
I hope that I am a person where people can drop their own trials at my feet and receive some care and      love before picking them back up and moving on.
I hope I never become selfish and centered only on myself
I hope that people come to know God because they knew me.

I have such a long way to go. Not a day goes by that I'm not trying to become a better person.  I'm sorry when I don't measure up to what I think I should be or want to be.

So...in all my little burdens, I will continue to work on me.  Work on becoming a better me.


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Monday, February 15, 2016

The last 4 days

Each day, I've sat down to write. Multiple times in a day, I sat down to write. I opened a blank page and stared at the expanse of nothing.  Nothing on the page, nothing in my head. Not because there is nothing going on.

Not even because my head has nothing in it.  My head has everything in it.  Every. Thing.

I'm tired.  I'm tired of feeling tired from the moment I wake up every day.  I feel like I am in a cloud of fatigue.

My parents were here all last week.  It was so nice to have them around.  I never realize how much is missing from my life until something different comes along.  I didn't realize how nice it was to have someone else around just to be around.  They didn't solve any great mysteries, take away any pain or suffering.  They didn't pay off my debts, find me a new job or fill my freezer with months of groceries.  They did nothing; but everything.  They were here.  They were here to witness the hours of our day.  They were here to amplify the joy we really only share between the four of us.

But, then they left.  In their leaving, I realized just how lonely and isolated we are.   I realized how far we are from everyone else's fullness of life they experience.  I realized how far we are from the friends I once had;  the friends I had come to rely on as family since mine are so far away.  I realized how quiet we are when it's just us.  I realized that I am nothing like the person I use to be.  I realized how much this disease has changed us into something I don't even recognize anymore.  I didn't even realize we were changing.

Saturday, I worked at the temple.  I was introduced to a lady whose son passed away a couple of years ago.  He was in his 40's I think.  He had lived a life confined to a wheelchair.  I knew of her son, everyone in town knew of her son.  He loved to sit on his corner and wave to people passing by.  Not a day went by that I didn't drive by this lady's house and imagine what her life was like.  I tried to imagine if it was full of purpose or filled with fatigue like me; being a single mother, taking on the responsibility of caring for a needy child.

I finally met her.  I actually shook her hand...like she was some celebrity in the world of the dying.  I wanted to tell her how often I thought of her.  I wanted to sit down and take notes and learn from her struggles.  I wanted so much to grab a hold of her and beg her to never leave my side.  Instead, I said, "It's so nice to meet you!"
She new a minuscule amount about me and our journey and so her response to me was, "It's a different kind of life, isn't it?"  As she looked deeply into my eyes, I knew she recognized my own vacant shell of isolation.  She didn't have pity for me, empathy.

So, I suppose the last four days wasn't a total wreck.  Sam had been asked to the Valentine's dance.  He was as handsome as ever and had a cute date.  He enjoyed the evening but came home sick.  He is still very sick.  When Sam does nothing but sleeps, you know he is feeling miserable.  He was barely awake yesterday and has slept in today.
Valentines Dance 2016- Sam's last Valentine's High School Dance


Spencer is doing well.  He is working hard but he is doing so many great things as his missionary efforts continue.  He has been on splits with the missionaries and brought a young man to church yesterday.  Tomorrow, he will be attending the Addiction Recovery Classes with this young man and support him as he works to get over his smoking and drinking addictions.  He has been helping friends are going through difficult family struggles and other issues.   He has set aside his own worries to help those around him.  He makes me very proud.

Shelbie is doing remarkable as well.  She has a good outlook on life.  She still has moments of fear and worry but for the most part, she is managing those times.  She is hopeful.  She had her transfusion on Thursday.  It went well but they are getting harder and harder to get through mentally. The side effects are usual but we have avoided an ER trip this weekend.

Finally, I do want to mention a big thanks to some people we don't even know who sent a fun little package from Pittsburgh!  Their daughter was attending college here but had to go home for brain surgery.  Spencer served with her brother in Colorado and they are best friends in Utah now.  I told her they could store all her things in our basement until she came back later this year.  This was their thanks for  helping them out.  Honestly, I forgot her things were down there!  It was so sweet! 




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Thursday, February 11, 2016

Eureka

Wonders never cease!

We have an appointment.  A little farther out than I wish but still...February 24th.

Not only will we be starting the diagnostic procedures to figure out what Shelbie has but this will be a new chapter in adult hematology/oncology care for my kids.   Hopefully.  I feel like I have to add disclaimers and dangling thoughts because things rarely go as planned; as I plan.

Today, is transfusion day.  It's going well. Each IV gets a little bit harder and harder to start since most of her veins are surrounded by so much scar tissue.

I paid a little closer attention today to her labs.  Her monocytes continue to be flagged as fairly high.  This has been an ongoing trend since last year that I haven't paid much attention to.  Monocytes are white cells that increase with infection, autoimmune disorders and cancer.   They are the first responders in these situations.

As I thought about this, I remembered that her last bone marrow biopsy this past fall, they noted an increased number of Macrophages.  These are the the 'big eater' cells that are sent to 'clean' up the destruction efforts of the monocytes...basically, macrophages come from monocytes.  I remember questioning this increase and wondering why?  A healthy person who hasn't been sick would have no need for increased macrophages.

It's the same old story...I question and question things I don't understand and get shut down time after time.

It is becoming more and more clear with each piece of this puzzle that something has been plaguing Shelbie for at least a year.  More and more, I feel some responsibility in things getting this far without resolve. In fact, I would even call it dread and regret.  If she has something life threatening, even fatal that could have been prevented, it will be challenging to get over that.

This morning, once Shelbie was resting, the nurse commented on how hard life has been for us this past year.  I hadn't really stopped to think about the past year.  She's right.  We have endured many big things from cancer in my dad, a stroke with my mom, Sam's heart and lung abnormalities, Shelbie's heart and lung abnormalities, Spencer's Salmonella infection and C-diff, Shelbie's stroke, my surgery and now this.  Yes, it's been a big year!  With that said, I feel like we have fared well, better than to be expected, really.  We are better and stronger in many ways.  Weak and fragile in others.

At any rate...enough of memory lane.  We have a job to do now.


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Tuesday, February 9, 2016

If nothing else...

We are being refined while we wait.

Not a day goes by that I haven't learned something...for good...or for bad.

Not a day goes by that the Lord doesn't speak to me through some unsuspecting channel.

Not a day goes by that I wonder what God has in store for us.

The story of the day is our continued wait!  The long wait.  It's getting old.  It's getting tiresome.  It's getting to be the joke of the week I think.  Like, it must not be that big of a deal if nothing is happening...how can that be?  How does that happen?

I don't know.

But, I learned this today...from Robert D. Hales- Sometimes, the waiting isn't about God slow to make plans for us, maybe it's more about me/us.  Maybe I'm just not ready for God's big plans.  Maybe, I'm slow to grow. Maybe, in all this waiting and uncertainty, there is a gift, a tender mercy...or my favorite, a post card from Heaven yet to be received; recognized.

This thought struck a chord with me.  Never before have I thought of waiting in these terms.

And actually...there was a glimmer of hope today that things are finally on the move and wouldn't you know it...I feel a slight twinge of panic...maybe I'm not ready to find out what this is that Shelbie has.

We met with our family doc yesterday and low and behold, the new Seattle doc completely dropped the ball.  There has been no communication, no promised conference call, no planned execution of plans.  Nope.  In fact, our doctor was completely lost.  He thought he sent the referral and the rest was history.

He was very good to listen and very good to take charge.  His nurse called me today and all of the records have been transferred to University of Utah/Huntsman Cancer center.  The nurse contacted me today to tell me that she received those records and have looked them over.  Their team of hematologists/oncologists will be meeting in the morning to discuss her case and decide which doc will best serve her.   I am guessing we will hear back on a date Thursday or Friday.

While visiting in our doctor's office Monday, I asked why we can't just have a local surgeon do the biopsy.  He reminded me that we are dealing with the Aorta.  Not a lot of people really want to start playing around with scalpels and unknown tissue that is sitting, swollen and enlarged on the aorta, right by the renal arteries.  Duh...I guess I forgot that smallish detail.  So...of course, we will wait.

Everyday, I am learning that God really does know best.  Rather than have a spiritual panic attack and meltdown, snatching back our problems to shoulder on our own, in our time, He really does have this figured out.  I want to trust him more. I don't want to engage in spiritual panicking, as Sharon Eubanks said in her BYU-I devotional last year.  I want to be calm, engaged, trusting, patient.  I've blown it a dozen times already but the important point, is that it doesn't last long and try again.  Right?  Isn't that the point?

Even as I type this, and an appointment is coming and things are moving...just what I wanted...I want to panic! Am I ready for what is coming next?  What if I'm not?  Maybe waiting isn't so bad!

Good grief...being a fallen, mortal being is rough some days!!  Rough I tell you!

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Sunday, February 7, 2016

The Wrestle

Today in church, we talked about the point that we are here to experience joy.  It makes for an interesting conversation.

I think we grow up thinking that joy and happiness are what we signed up for when we stood in line to get a body.  Men are that they might have joy...or new shoes, or a nice car, or a fancy house, or a good time every Friday night, or a trip to Cancun because you had a really hard month and deserve a break.

In reality, we discover that instead of new shoes, or a nice car, we get a mortgage, a car payment, medical bills and a job that doesn't even cover that much.  Friday nights are spent in hopes of an early bedtime and Cancun trips are for the rich and famous but if we're lucky, we get a medical trip to somewhere exotic like Utah, or Washington. Hey, then we get creative in convincing the kids, It will be fun!

So then, what is this joy we are suppose to be experiencing.  How come it is so fleeting?

I have this feeling that people look at me with pity and sympathy.  Sometimes, I wonder if people ever really see anything but a pathetic, tired, sick family?

The truth is, we are in a state of wrestling.  We are in this strange place where the things of the world really have such little importance to me.  We are wrestling with spiritual things.  We are being asked to learn things that will surely fit us for Heaven.  We are being asked to tread a little too close to Calvary for comfort.  I am completely out of touch with the world right now.  I'm even out of touch with all the little aggravations I once had.   In fact, anytime I have to play in the world is just aggravating.

Joy is something different to me.  Maybe joy changes as our life circumstances change.

Joy is being with my family
Joy is laughing together when we should be crying
Joy is crying when we should be laughing
Joy is chaos that becomes clarified by the Spirit
Joy is calm
Joy is patience today when yesterday it nearly impossible to achieve
Joy is a flickering peace in the bottom of my soul that reminds me it's going to be okay...eventually
Joy is a flood of peace
Joy is realizing we get to try again
Joy is trying again
Joy is being taught
Joy is learning...
Joy is suffering well and wisely
Joy is seeing my kids wrestle and struggle and strain in the spirit
Joy is healthy spirits even though the body is weak
Joy is realizing that just You and God against the world is enough

So, in our wrestles this week...

Tomorrow, we meet with our family doctor, get a report of the conference call he supposedly had on Thursday.  In this appointment, we are hoping to have the diagnostic testing set up for Shelbie so that we can finally figure out what the heck is going on.

I am sort of done with this phase of the struggle, ready for what's coming next.

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Saturday, February 6, 2016

What's important to you?




A couple of months ago, a headline on MSN caught my eye.  It was the story of Joey and Rory.  A husband and wife who write and sing country songs.  I hadn't really heard of them before but I started following their blog.  Joey has cancer.  She is in her final weeks of life and on hospice.  Rory posts the most beautiful writings, photographs and videos.  I love their blog.

Yesterday, Rory posted this video they made and talked about what is important in their world right now.

I love that thought...What is important to you?  What is important to me?

Here is my short list...

My kids.
My family
My one doctor who still believes in me
A Wasband and me who keep trying to have a perfect divorce of peace and understanding and a        combined love for our children.
Friends in far places
Friends two doors down
Late nights laying around eating and talking.
Surprising my kids with an extra measure of love and understanding when they think I'm going to be           upset or disappointed.
Watching my kids dream
Seeing their dreams take shape
Serving others; caring when no one else does
Watching my kids notice the needs of others and acting on that
Broken things, broken me
The smell of rain and the promise of a rainbow
The friends who don't give up on me.  Who say nothing at all, but speak volumes by staying close
Postcards from Heaven
Watching courage in action
Creating happiness
Having enough.  Just enough.
The chance to try again

I could go on...What is important to you?

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Friday, February 5, 2016

How to feel the wrath

Yesterday was a shear and utter disaster in our little world.  Mid morning, I received an email from Seattle saying that the Doctor was scheduled out well into March and they would get us in for something during the next month.

I was livid.  I went from content to contempt in seconds.  I went from stable to my the room spinning in less time than it takes to flinch. My heart flooded with adrenaline and literally forgot to beat and ached with fury.  Yes, me.  Little, mild mannered me was coming apart in the most magnificent way.

I fired off emails of discontent to the nurse in Seattle and to our doctor in Boston.  I made phone calls to our family doctor.  No one answered my calls.  Within the hour though, I heard back from Dr. Shimamura.  She agreed with me that this was not something that could wait until March.  She promised me on our first phone call two weeks ago that if at any time, she felt we were in a dire situation, she advise me to stay put and work with the oncologist we have.  We aren't dire yet, but we can't wait either.

After an hour, I heard back from the nurse in Seattle.  She said that the plan, if I agreed, was to have a conference call with our family doctor so that he could arrange for all the testing and biopsies that Dr. K in Seattle wants.  When those results have been returned to Dr. K, then we will go to Seattle for a treatment plan....unless...she has cancer unrelated to the bone marrow or if she has metastatic cancer.  In this scenario, we will have to seek treatment with a different doctor specializing in malignancies.

I felt bad and I felt relieved.  I apologized to the nurse for being upset and she agreed that this has been a circus so far.

But..the day dragged on.  I had an IEP meeting for Sam.  His last one.  His IEP team has been phenomenal.  They have been one of the greatest educational supports I have ever experienced with any of the kids.  It was hard though.  They kept asking Sam what his plan was upon graduation.  I don't think they actually were, but to me, it felt like they were drilling and grilling him, like he had to decide the next 10 years right there and then!  Sam was lost.  He doesn't even know what he is going to do next Monday, let alone the day after graduation.  What they don't know is that he is terrified of what is happening to Shelbie and he is terrified of the decisions he is faced with in three months.

I was getting upset watching him struggle to give them an answer that most every other 18 year old could give who doesn't have to wonder how long they have to live.  That anger from the previous events of the morning bubbled up to the surface and I wanted to turn over the table and run out of the room screaming, with Sam dragging behind me.  "Don't you understand that I don't really care about you, about school, about making stupid plans?  What I care about is that my kids are dying!!"  That's the ticker tape of dialog in my head in that moment, so glad I didn't use my inside voice.   Instead, I sat there, willing myself to calm down.  To not cry.  This was not their fault.

The day continued to crumble apart and then ended with a bang!  Sam had put off two Government assignments that the teacher was giving him an extra day to do.  I was tempted to just tell him to forget it.  As long as we get a D, what do I care.  Instead, I sat down at 10pm to help him, when I finally finished work for the day, and I was angry.  It was a major assignment.  Not something we could knock out in 10 minutes.   I could not contain myself.  I was tired, I still hadn't made dinner for the kids and I could care less about Government.

Sam got the brunt of my bad attitude and I really hurt his feelings.  Sam was upset, Shelbie was just trying to stay out of the fray and was cleaning the house and I felt ashamed.

When we finally said our prayers and headed to bed, I had mended my undoings.

I laid in bed sobbing and realized that as much as I talk of Christ.  As much as I praise God.  As much as I try to do what it is right...I have totally miscalculated the workings of the adversary.  He can not be happy with the progress we are making to be fit for Heaven.  Yesterday, he reminded me that he isn't going to let us travel to Heaven without a fight.  There will be missed connections, delays of all variety, roadblocks and potholes, all designed to convince us to detour from the road we must travel.

 Yesterday, I let him win.  Yesterday, I thought it was all God's fault but God wasn't making life miserable for me, the Adversary was.  I was making life miserable for me.

Lesson learned, or more correctly, a lesson I am learning.  Satan has a wrath that comes unleashed when we least expect...or maybe when should be expecting it.  He wants to own us just as much as God does.  The choice is ours. The more we try to do what is right, the harder Satan will fight.  It's so true...



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Thursday, February 4, 2016

Weights and measures

I heard it said once, that each of our stories bears a weight.

We all have a story.  Many stories.  We measure ourselves and each other up by the stories we tell.  Often, when we don't understand something, the story takes on a life of it's own.  As humans, we have this innate need to make sense of something and we do that with stories.  Stories that bear the weight of the unknown.  Somehow, that makes it better regardless of how much truth is in the story.  If it makes more sense than reality, our own or someone else's, that's the version of life we run with.

Today, our story is hard and heavy.  It's been a hard week of trying to be patient and focused.  There has been no shortage of people making up stories about us and that is a hard trial in itself, everything else aside.  There has been no shortage of stories we have made up for ourselves to make this journey make more sense.

I don't understand why all of this is going so slow.  I don't understand God's timing.  I guess you could say, I lost my place in God's story for Shelbie, for me, for us. I'm not even sure I'm in the right chapter. I can't find the reason or rhyme for this.

  I have questioned myself over and over.  Maybe I made a mistake in measuring what I thought was God's will for Shelbie.  I know that there are some who think this was just some dramatic moment that will never amount to anything; I've already heard those comments.  That will be a story you may hear but it's not my story.

I can't deny what I have felt and seen the past three months.  God is up to something and Shelbie is the main character in his story of redemption right now.  There are people whose lives have changed dramatically in ways I know are for the peace and happiness of Shelbie.  This many people can't be affected for this to be nothing.

Let's review...

Little Bear is here for us.  I know that now.  She has needed to be loved and Shelbie was the perfect person to love her this month.  It has kept Shelbie's sights on eternity.

Our old friends from 7 years ago, made a visit the second week in January, days before we thought anything was wrong with Shelbie.  They announced they were moving back.  They don't really know why, the job he is taking won't even be able to pay him for months!  This girl rescued Shelbie in one of the most horrific teen years we have ever experienced.  They were best friends.  This wasn't a move they were going to mull over.  The spirit said move and they are moving.  They will be here tomorrow!   When they told me they were coming back, I had the most overwhelming feeling of foreboding joy.  I said to myself, "Something is going to happen...they are coming back for us.  I'm going to need her."

Our newest friends, the elderly couple we met at Rehab last summer, have a part to play in this.  They call Shelbie every other day and love on her.  They have given her a reason to smile.   Their part is still developing but I know Heavenly Father has placed them in our life for a good purpose.

My parent's lives have changed dramatically and undeniably, they will now be able to spend time with us.  Shelbie loves her grandparents more than anything.  They have an amazing time together and we need them.

Oddly, my Wasband's family decided last month to make a trip back here to spend a week this month.  No special reason.  Just because...but I know it is for a special reason.  Who comes here in the month of February...the worst month of the year!

There's more but I will save that for some other time.

For today...the weight of this story is heavy and I am tired and it's hard to bear. It feels impossible to measure our progress spiritually.  It feels like we are just stuck.  Shelbie was in a lot of pain last night and I didn't know what to do for her.  I can't make it stop and I don't even know what is causing it...and that makes my head start jumping ahead in the story when the chapter has yet to be written...

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Tuesday, February 2, 2016

Meanwhile...

Meanwhile...back in mortality while we wait for God to get his plans in place, I want to share a list of my favorite collection of quotes.  Most of them come from a book my good friend gave me 20 years ago when we first found out the kids had Shwachman Diamond Syndrome.  She was my rock back then.

The book is called, Making Sense of Suffering by Wayne Brickey.  Feel free to steal these.  I couldn't find any of his quotes on Pinterest, the resource for all things!  So, I made my own.







Every page of his book is amazing...I will make more of these little quotes because they are real gems!   Here is another of my favorites...

"Oddly enough, our vision sometimes improves when our conditions worsen, creating an occasional windowpane, or window of pain, in the veil.  A paralyzing problem can bring the stillness that causes us to pause and, for a change, reverently look at the whole scene, which is the smallest scene we can trust."

On the home front, it's been a good day.  I spent a fair bit of the morning on the ocean of emotion but as a wise man once said, "Our best efforts in the strong waves of emotion may seem weak.  But what matters is our exertion, not our position."  I really put a lot of effort into crying, I felt good about my exertion for sure!  So, yay for progress! 

Tonight...I got to witness the amazing testimony of my daughter; a strength is shining through in her like I have never before seen.  It was inspiring.  She said how blessed she has been feeling to be able to see the hand of God in her life. 

I listened as Sam and Shelbie engaged in an interesting conversation of enduring to the end.  It reminded me that I need to spend more time listening to them work through the principles of the gospel on their own.  I have taught them and provided a laboratory for them to live and learn the gospel, it's so rewarding to see them come into it on their own.  

Finally, I got to talk to Spencer.  He checks in every night for a progress report.  I wish he could be here to witness the transformation of our family and to feel the spirit that is in our home, stronger than ever.  I wish he could see his sister and the light she radiates. He is doing great!  He is going on splits with the Elders. He has been sharing our story with his boss who has been inspired and maybe she will find some peace in her own life.

All in all...that's life and time marches on.





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Thinking, wishing, waiting

Is February over yet?  Could this month be any longer?  Oh, wait, it's only day 2 of February.

I've been thinking about the past year; where we have been, where we are now and what lies before us.  I've been thinking about part of the conversation I had with Dr. S last week.

She reminded me that I can't become casual in the care for the kids.  I can't just let things slide.  I have to be better at advocating and following up.  The fact that we no longer have a team of doctors and here we are three weeks into this disaster with Shelbie and no doctor with an established protocol, not long term relationships...nothing.  What we did have became weird.  They didn't want to bother with us anymore.  They didn't want to bother with me.  So, instead of standing my ground, I let it slide.  When they accused me of being dramatic and worrying over nothing, I believed in them and trusted in them and I let my hunch to follow up, go. I let it go at the expense of my kids because I didn't want to be THAT mother; because I know people look at me like the crazy mom.  The Munchhausen by Proxy mom.  I have always been that to people.  They look at me with pity in their eyes, not because I have sick kids because I just perpetuate it in some way.

And now, I'm angry and upset.  I should have done more.  I should have continued to bug them and taken them to another doctor until we were listened to. I should have not cared.  But, I did.  I care about what people think of me.

But, at the same time, it's not like I just have one kid with issues.  I have three.  For me to be following up on everything that comes up, it would literally be a full time job.  It would take moving away from here or taking the time to travel to other cities with more resources.  It would require me to be a full time mom and caregiver.  And even if I did have the time and resources to do all that is required, what quality of life does that leave for them?

So, now I find myself in a bind that is most uncomfortable.  I am already two months behind on Cardiology follow ups.  Three or four months behind on Pulmonology.  Shelbie hasn't been to Rehab since October and you can tell.   Spencer hasn't gained anything in the weight department to speak of since losing more than half of his body mass last Fall and GI wanted to see him in December but then Shelbie had a stroke.  I had an unplanned surgery and now this.

I no longer know how to manage my kids.  I don't know where to start to make up the lost time. I am lost in the struggle and no medical support to speak of except for one kind, hardworking woman in Boston who goes to the ends of the earth for my children.

That's what I've been thinking about.

Wishing...wishing that things were different today.  Wishing I had a better handle on this situation.  Wishing I didn't have to watch Shelbie suffer with the unknown.  Wishing we had answers.

Waiting...Still waiting.  I did receive an email this morning that a conference call did happen between Dr. S in Boston and Dr. K in Seattle at Fred Hutchinson to discuss this rare situation.  I did submit the insurance information requested this morning.  Then it hit me, that Obamacare could very well stand in the way between this plan working out.  And then what...

So, now, I'm thinking...I better just put this back in God's hands for today.  Wishing I could actually do this better than I do and waiting for the day when I have finally figured these tests and trials out!

In other news...When I get lost in things I can't control, I do extreme things to my hair.  It's now red and chopped...as in shaved the back and just to the bottom of my earlobes.  There's no way the little one inch hairs are about to fit in a pony tail...but, I like it.  I really like it.  It's a fun change and will be easy peasy.

In one more piece of news...I ran into a teacher at the high school yesterday, we were talking about how chocolate seems to be the answer to all of life's rough roads.  I told her chocolate milk from Reed's Dairy was my new muse...her reply has left me laughing, "Chocolate milk is liquid courage!"

Ha ha...If you need me, I'll be in the corner rocking with my flask of chocolate milk!

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