Monday, October 31, 2016

Day 4...

It has been a frustrating day but I feel like maybe we are making some headway in getting a diagnosis.   At least it feels like the wide net they cast has been narrowed down a little.

The morning kicked off at 4:00 am!  The sofa in her room is plenty comfortable but the most I can sleep is 2 hours, maybe 3.  When they came in for 4 am vitals and bloodwork, I went to the family bathrooms for a shower just to beat the morning rush.  I came back to her room a half hour later and answered some emails, did a little work and then took a nap at 7.

We didn't have to endure the whole rigmarole of rounds with a dozen residents, fellows, attendings etc from all different specialties.  I was pleasantly surprised when just our doctor came in.  Our good old Dr. Shami. He is a goldmine of intelligence to me.  He had some students with him but I didn't care about that, we finally had some continuity of care and tomorrow we might get to see our Immunologist Dr. Gundlapalli, another one of our favorite docs.

It's frustrating here because we have been getting some mixed up messages.  Yesterday, the Neurologist said the brain MRI was "Stone Cold Normal".  This morning, I asked our doctor about that and he said it wasn't normal at all.  The MRI showed that there are abnormalities in the white matter.  Her brain looks like that of a 70 or 80 year old.  She doesn't have the brain of a 24 year old girl.

White matter in the brain is where the myelinated nerve bundles live. It's responsible for nerve impulses, communication between the two hemispheres, co-ordination, perception, memory, motor skills and a few other important things we need to function.

When our doctor said that, I wanted to shrink into my pocket and pretend I no longer existed.  Shelbie had terror and shock in her eyes but a crooked smile on her face and nothing in that moment seemed real.  I don't even know how that could be unless it's a result of the short telomeres.  I asked that question and he admits he isn't sure but it seems plausible since shortening telomeres is what causes us all to age.  It's just that we are suppose to experience aging when we are 60, 70, and 80, not 24.

The reason this finding is so incredible is because last Wednesday, when we saw him in clinic, he had mentioned that since we had seen him the previous month, he had thought about her issues and felt like maybe we needed to start investigating an issue with her myelin.  Interesting, but I didn't go any further with that in my head and I think to him, it was something to investigate down the road.

He also mentioned about a rare disease he studied in two patients with CVID who had similar symptoms of stroke as Shelbie.  They had a rare, extremely rare, arthritis that affects the major arteries in the brain and the aorta and when it flares, it causes the artery to clamp down and stop the flow of blood which results in a stroke like event.  It can also include clots.  He said he wanted to investigate that further with more tests and a consult with a Rheumatologist.

The Rheumatologist came in about an hour later and after her exam and history gathering, she said the first thing she thought of was a rare arthritis of the arteries!  The very same thing Dr. Shami thought.  She called it Takayasu Arteritis.   I have read up on it and it does sound like Shelbie.   She brought her Attending back a while later and she had a slightly different opinion but basically, it is agreed that Shelbie has a disease of the vessels...now to narrow it down.

As much as it felt a relief to have some direction and narrow things down, it has made me feel sick all day.  Sick and scared.

Tomorrow, they are doing some big tests, angiograms, arteriorgrams, and more in depth study of her abdomen and lungs.  We were hoping it could be done today but no such thing.

The Neurologist came back in this afternoon and he said he is just so sure that what Shelbie had was just a fainting spell or a seizure since her MRI is so normal!  Bleh.   I just agreed and thanked him so much and then tore up his business cards when he left.  He plans to see her in three months.  As if...the girl has a clot in her lung...and two stroke like events, a leg that is swollen and worse today...and we are calling it a fainting spell?  No thanks...don't waste my time.

Physically, Shelbie's leg is more painful tonight than it has been and her blood pressure is crazy low!  For two days it's been 90/50, 90/40 and they eve had a 90/36!  Her heart rate has come back down from the low 100's.

We did have some good things today though...my niece happened to fly into Salt Lake last night so she came up this afternoon and spent a few hours.  It was so nice to see family!!  She is just a year younger than Shelbie.

My cousin texted me this morning.  He had a bone marrow transplant a few weeks ago and is getting through his 100 days before he gets to go home.  He was here for clinics so he stopped by to visit.  It was really good see him but I know he felt some anxiety having to come back to the transplant unit.  We are in the room beside the room he spent a few months in.

Then, Spencer surprised us with a drive down to see Shelbie.  I miss the boys so much.  I can hardly stand it. My Wasband went home today.

Tonight, we are going to watch Halloween movies and shake off the day.
EEG

A view from her room.

This about sums up how Shelbie is feeling...Done!

Batman!  He has been our favorite nurse but today was the end of his week on duty.  FYI...He looks so much like my brother!!  It's a little freaky.  (You can't really tell with the mask on)

Shelbie and my Niece Kylie. 




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Sunday, October 30, 2016

Today's events

Today has been an alright day.  I got very little sleep last night; tossed and turned and maybe got 2 hours in.  I haven't been too tired today which is surprising, mostly restless.  I have had to take a lot of walks.

This morning, we went on a little walk up to the cafeteria for some lemonade and we wandered the halls looking at the art.  Huntsman's has amazing art down each corridor.  It's more like a gallery than it is a hospital.  While we were walking, a whole group of church members were walking down the hall we were in.  They were very friendly and asked if we were planning to go to church.  I wanted to go but Shelbie had to get back to her room for rounds and more testing.  They said they would come to her room.  A little while later, they did come and read a thought and blessed the sacrament for Shelbie and her dad.  I decided to go to the meeting upstairs.  They asked me to give the opening prayer.

I felt very strange in my animal print leggings, converse and oversized sweater.  There were only two other patients there and they were in their Sunday best and the rest were members of the hospital branch and missionaries.  It's been a long time since I felt such an incredibly strong spirit in a church meeting.  I couldn't even get through the prayer, the songs...Before it started a gentleman came up to shake my hand and sat down to find out what we were doing here.  I shared our story.  He happened to be a physician and was telling me what he thought Dyskeratosis Congenita was.  He was right!  He is retired because he has a rare eye disease and he is almost blind.  I had no idea just talking to him.  He shared some amazing stories with me before the meeting started.

Church was just 30 minutes long but I missed rounds and got back to her room just as they were getting ready to start an EEG on Shelbie.

They told us that Shelbie won't be going anywhere for at least another 3 days or more.  They are perplexed because there is one test she has had twice and both times, the results were inconclusive.  They did it on Friday in clinic and told me it was textbook normal.  It is an ultrasound of her bad leg.  As they run the ultrasound over the veins, they press really hard to compress the vein so they can see any clots.  If they are unable to compress the vein, it usually means there is a blockage.  They ran the test again on Saturday and again said, "Textbook normal."  But the team doing rounds said it wasn't textbook normal because they still can't get that vein to compress!  So, now, they are going to do an angiogram to see why there seems to be a blockage.  I think that will happen tomorrow.

Also today, she had a brain MRI and a CT scan of her brain and they injected dye into the vessels in the brain.  We don't have results on those tests yet.  Shelbie also had an EEG and again, no results yet.

The neurologist came in today.  He was a little frustrating.  He asked her to repeat for the one millionth time what took place on Thursday night.  He asked her a million questions about the vision loss, falling over etc.  The event was not proceeded by anything strange, no warning signs.  Her vision didn't dull, it just shut off like a light.  There were no odd things after either.  It's almost identical to what happened last December.

He thinks it's unlikely that she had a stroke.  He thinks it is something like a complicated migraine or syncope and she just fainted.  He even suggested she had a seizure.  The symptoms for any of those include, cold sweats, clammy skin, racing heart, palpitations, auras, pain, tunnel vision, extreme headache that lasts for several minutes to hours.  Shelbie had none of that and her event didn't last long like the others would have.  She has had seizures plenty of times before and this was not a seizure.

Yet, the guy began by confirming she has a history of pulmonary embolism last year, had a neurological event 11 months ago, has an extremely sore and swollen leg, 3" bigger than her other leg.  Today her entire right side is swollen.  Plasma comes with a black box warning for blood clots and she has been on that for 3 years now. Her INR is low which means her blood is a little too thick and they are giving her blood thinner shots to remedy that.  Her vision shut down, didn't tunnel and that is the hallmark sign of a stroke. She fell to the right side with right side weakness, another hallmark sign of a stroke...yet he pulls out these total wild cards of migraine, syncope and seizures.  The deck is stacked for stroke but he is going rogue.  It upsets me because we can't afford to be misdiagnosed.  This could be incredibly dangerous if they don't get this right.   The rest of the team all feels like we are hunting a bigger clot which is why they won't let her go.  This morning, they were very perplexed with the right side swelling.

All the same, they may never be able to find the source of the problem.  The clot probably wasn't big enough to cause vessel damage which is why they can't find any evidence of a clot passing through her brain.  The team is testing her for 11 different diseases that can cause symptoms of a stroke.  They drew that blood today.

This afternoon, her blood pressure has been quite low, she's been a little tipsy on her feet and pretty nauseated.  I'm guessing the nausea is from all the contrast they've been pumping her full of.

She is doing well emotionally all things considered.  Her dad's friends came up to visit and that cheered her up.  We will just have to continue to be patient and see what comes up tomorrow.  It will be another busy day.

I'm hoping to get some sleep tonight.  I'm still sort of fighting a cold and nausea but, life goes on and it can always be worse.



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In the long hours

I have spent a little more than 20 hours in the car this week as long ribbons of highway stretch out ahead.  I rarely have quiet moments in life.  They may happen between the hours of 1 am and 5 am when sleep hides behind the changing landscape of my mind. So, I have been taking advantage of the time to search for understanding and peace.

I ramble on with disconnected thoughts at the steps of Heaven, hoping God hears me.  I haven't been able to understand the events of this year and this year has been eventful.  I don't understand what is happening to Shelbie.  I don't understand how everyone around me seems to find answers and treatments and solutions to their problems but we still clamor and climb against a growing wall of problems and roadblocks.

In a response to my Bishop's wife, I texted these words on Friday night...

        "It boggles my mind.  Like, in an unbelievable way.  I don't understand why my kids are still here?  I mean, we have tragic things going on but they survive it all.  Some people don't survive even a small stroke like Shelbie had last night and that was even the second one in a year!  I don't get it.  I'm both happy and incredibly blessed but exhausted from the daily adrenaline rush of treading so close to the limits of mortality."

Why?  It's the age old question...Why do bad things happen to good people?  Why does a loving God allow such difficult things too happen and without apology, keeps sending his children into the thick of mortality's extremities?

I have never asked 'Why' to engage in an argument with God but I have asked to understand.  People often say, "I bet you are going to have a lot of questions for God when you see him again.  He is going to have some explaining to do."  I will and do, have a lot of questions but not out of anger or feeling that I've been treated unfairly but because the mysteries of why God does what he does intrigues me.

As I left the house Saturday morning, after only 3 hours of sleep, to make another drive to Utah, I was exhausted mentally, physically and spiritually.  I dropped my head to the steering wheel and cried out, "I cannot do this."  I picked my heavy head back up and started on the road.  The radio was on my usual station of inspirational music and a talk was on by M. Russell Ballard and his clear voice spoke loudly to my soul...
     
For some, Christ’s invitation to believe and remain continues to be hard—or difficult to accept. Some disciples struggle to understand a specific Church policy or teaching. Others find concerns in our history or in the imperfections of some members and leaders, past and present. Still others find it difficult to live a religion that requires so much. Finally, some have become “weary in well-doing.”5 For these and other reasons, some Church members vacillate in their faith, wondering if perhaps they should follow those who “went back, and walked no more” with Jesus.
If any one of you is faltering in your faith, I ask you the same question that Peter asked: “To whom shall [you] go?”
Life is hard and difficult to accept...so...am I going to give up? No. Probably not but I am tired. 
Never fail to give equal time to the Lord through honest attempts to understand what the Lord has revealed. As my dear friend and former colleague Elder Neal A. Maxwell once said, “We should not assume … that just because something is unexplainable by us it is unexplainable.”
With that, I began to plead to understand, even just the events of this week.  So many losses, so many trials, so many blessings and so many opportunities to be humbled and so many trials...I know, I listed that twice because they come in multiplicity of waves upon waves. 
As I drove in the quiet, I began to understand.  Heaven reached down and opened my mind.  I went to what I know about God. 
God is good.   God is a God of abundance not scarcity.  We don't have to work to obtain the kingdom of God, it is already within us; He sent us here with everything he is and everything he has. Above all else, God knows how to give good gifts to his children. 
          "If a son shall ask bread of any of you that is a father, will he give him a stone?  or if he ask a fish, will he for a fish give him a serpent?  Or if he shall ask an egg, will he offer him a scorpion? If ye then, being evil, know how to give good gifts unto your children; how much more shall your heavenly father give the Holy Spirit to them that ask him?"
Could it be that I asked for these problems?  Could it be that all these trials and setbacks and disappointments and heartache are the good gifts that God has given me?  Could it be that God does not differentiate between blessings and trials...he sees all things as blessings?  
Time is nothing to God but everything to us.  Miracles seem impossible yet are the very fibers and nature of God and there is no hierarchy to the miracles that God can perform.  How often do our blessings feel as overwhelming as some trials?  Sometimes, the blessings are so great and powerful they exhaust us! 
God's ways are not my ways...What is a trial to me is a sanctifying project to God where he is giving me his highest attentions...yet I murmur and whine and complain and cry and lose my patience and threaten to leave and stomp my feet and throw a fit and give up and give in.
Somewhere in all of these thoughts are the answer to the whys of all we face and all we do.  
Why does a loving God permit hard and 'bad' things to happen to good people...over and over? 
Because they are blessings!  God could not in his nature give something bad to his children, Luke even told us in the bible.  He gives us good gifts.  He isn't up there metering out punishments to less than perfect children.  We are suppose to be imperfect, he wants to watch his children grow and progress just as it brings me such joy to see my kids grow and mature and become amazing human beings! 
On the contrary, God is up there showering down blessings like confetti, even blessings that look hard and feel hard, and he is a God of abundance and shares his blessings freely.  I asked for patience and he blessed me with opportunities to become intimate with that virtue.  I asked why I feel so distant to him, he gave me this amazing opportunity to come running to Him, to cling to him, to lean on him because there is no one else who understands this extremity.  I felt alone and in this blessing of Shelbie's stroke, he sent loving people to take food to the boys, friends who just happened to be in Salt Lake and could come to share our burden.
I am grateful for these things I have learned.  Does it make all this better?  In a way it does.  Maybe not better and certainly not easy but to understand why it has to be this way makes all the difference in my second wind.  
Shelbie has been  on her own spiritual journey the past couple of months; rededicating herself as a disciple of Christ.  I warned her that when she turned back to her Father, he would want to keep her close for fear of her straying again.  Without fail, she has been riddled with problems in the past 6 weeks, car accidents, overwhelming work, very poor health and now this.  As we walked into the hospital Friday night, I put my arm around her and said, "This is it!  A trial of Faith.  This is what you wanted, to be close to your Father in Heaven.  You turned back to him.  He has prepared you for this moment. Remember that.  Hold on to that.  Everything is going to be okay.  Be patient with the process. This is just a little test of your faith and you can do this.  We can do this."
So, we hope on.  We accept our weaknesses and believe me, I am weak.  I am not as gracious in hosting these blessings as I should be and I'm not as grateful for these generous blessings as I need to be but God is good and continues to bless me in measures I constantly underestimate. 
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Saturday, October 29, 2016

The stroke



Thursday was an interesting day.  Before 9 am, I received two emails that notified me that I had been laid off from two different part time jobs.  I could hardly believe my luck?  Losing two jobs in one day.

Also on Thursday, the vacuum broke, the washer broke in a messy way and as the day was wrapping up, I got a distressing call from Shelbie who was coming home from a photo shoot out in the country.  She was very upset and described a neurological event that almost left her in the ditch.

She felt a strong vibration in her head and nearly simultaneously, fell over the console of her car and then lost her vision.  When she was able to gather herself and her vision came back, she was weak, confused and disoriented.

At first, I thought, "Now what?"  I was at my night job and had a million things to do.  She was about 10 minutes away and wanted to try and drive home so I let her!  I know...bad idea.   Anyways, about 5 minutes later, I had the most overpowering feeling that I had to get her to the hospital.  I hurried home and took her up.

Long story short...We had our appointment for a vascular study anyways on Friday so we headed down to Utah first thing Friday.  Shelbie was still quite weak and tired.

Spencer also had his cardiology appointment at the exact same time as Shelbie's studies.  My Wasband met us here so he went with Spencer and I stayed with Shelbie.   Shelbie was done first so instead of slipping into Spencer's clinic, I sent Shelbie to meet them and I headed up to Huntsman through the tunnels and skybridge to let our Doctor know what had transpired.

I visited with the nurse and explained the whole event.  Then made the long walk back to the University Hospital.  Just as I got back to the cardiovascular clinic, Spencer was coming out.  He and Shelbie reported that his heart hasn't been in rhythm for 4 weeks!  It was a despairing moment and I couldn't help but get a little upset.  They are going to stop his heart medication and start a new one in hopes of getting things settled down.  I got a little more upset in the parking garage as we said goodbye to their dad and come home.

I couldn't understand how something so big could happen and they let us go?  I said a prayer that I would understand the purpose of the day.

Shelbie wanted to make one stop to pick up a book and then we headed home.  Just as we were getting on the highway, our Doctor called and said, "Are you still here?  I heard what happened last night to Shelbie.  I have reviewed her tests, MRI and echo cardiogram from last month and I feel strongly that you need to come back and she needs to be admitted.  We think there is a large clot near her heart that is breaking off in pieces and sending those pieces out into her body."

I felt sick and panicked but at the same time, new that God had inspired our doctor.

Shelbie was admitted last night.  I stayed to get her settled, then Spencer and I drove home so I could pack some clothes and things Shelbie would need.  This morning, I left early and drove back down.

I hardly slept last night.  I got home just before 1am and waited up for Sam.  I haven't connected with him since Tuesday and felt it was important to spend a little time with him.  It had been raining all day and when I went to the basement to get a suitcase, I saw that water was running down the basement wall, behind the sheetrock and puddling on the floor!  I just shook my head, looked toward Heaven and said, "Really?"

All the way back down here, I prayed for wisdom and understanding.  I just don't understand why there are no answers.  Why everything has to be so complicated and hard.  I prayed that the doctors here would be inspired and listen to the Spirit.  I prayed that I would listen to the Spirit and know what questions to ask, what information to share with them.

I have seen this prayer answered many times today.  One thought I had while I was driving was that the Neurologist needed to know about the lesions they found on Shelbie's brain last December.  When Shelbie had her testing yesterday, I felt like the girl had made some mistakes.  She was testing arterial pressures in her legs and said that if the pressure at her ankles was lower than her arms, then that meant a blockage.   When she did it, the right ankle was only 95.  Her right arm was 109 but her left arm was 131 and her left ankle was 121.  When she saw the 95, she said, "Oh, that can't be right, let's just do it again?"  What the heck...? she kept doing it till she got it up to 110.   That's been bothering me all night long!

I prayed to know what to do with this information.  As I walked in Shelbie's room this morning, right behind me was a Radiologist and the Neurologist!  I couldn't believe that I didn't miss him from early rounds!  I got to ask all my questions and tell him about the lesions.  And...the Radiologist said, "Unfortunately, the girl who did the testing yesterday didn't do the test correctly and we really want to redo it."  I felt relieved.

Today has been a busy day for Cardiology and Neurology and all sorts of tests.  They had a little Halloween party outside of Shelbie's room so we walked down there and listened to some older folks playing the oldies on a bass, guitar, two banjos and harpsichord.  It was a nice break.  I kept fighting the tears because it was so nice that they would dedicate a Saturday to sharing their talents with the people here in the hospital.  They had a banquet table of food and treats and lots of families enjoyed some fun time together.

All we know for sure is that Shelbie had a stroke.  The clot was likely from her leg and is why it has been so sore and swollen.  We know that this is actually Shelbie's second stroke and third blood clot in a year.  She has that pulmonary embolism that showed up on CT scans.   Today, they started blood thinners and they are hunting the bigger clot.

I have had a steady stream of inspiration and thoughts and I will get them here soon.  Once again, I am both scared but trusting and hoping that everything is going to be okay.



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Wednesday, October 26, 2016

A lesson in whining

Long day...this is where I whine about how I screwed up and forgot to pick up the contrast for Shelbie to drink while we were in clinic so she could have a CT scan right at 3pm...

But instead of whining, I'm feeling pretty blessed and sufficiently humbled because at 3:30 when we showed up late to the CT Scan and immediately remembered what I was forgetting all day...We stood beside a lady who had no nose.

It wasn't just that she had a flat spot on her face with smooth skin, she had no nose.  Instead, she had a large, gaping hole so you could see the back of her head.  In that moment, whatever else we were feeling, really made no sense whatsoever and paled immensely in comparison to this woman.

My error put us behind an entire hour because she had to drink a liter of contrast over one hour before they could do the testing.  By the time we got back to clinic it was late in the day.  There was only one person sitting in clinic and on her chest was the tiniest baby.  He looked a minute old but he was two months.

We sat down across from her and started making small talk about her baby.  The small talk led to big talk.  Again, I felt so blessed.

She was a single mom with Chronic Myeloid Leukemia.  I asked if she had a good support system and she said her family had abandoned her when she chose to carry her baby instead of aborting it in favor of starting chemotherapy.

Her Fiance was killed in a car accident in Idaho just two weeks before she found out she was pregnant.  A couple of weeks after finding out she was pregnant, they discovered she had Leukemia.  Her family wanted her to abort the baby.  Her white count was 220,000!!  Normal is 5000.  She refused to give up her pregnancy.   For 9 months, she lived alone, with cancer.

She just got to start treatment and hopes that they will be able to get her into remission. This young woman clearly didn't have much in the way of worldly things.  I asked her how she was managing to do it all without any help and support.  Her response was, "Well, I have Huntsman's for support."

I was so disappointed when they called us back.  I really wanted to get her contact information so I could send her some care packages, even get her some help.  I will have to add her to my growing list of prayers to be offered.

As for Shelbie, well, it's another round of stump the doctor!  They really aren't sure what is causing the swelling and pain.  They have ruled out cellulitis.  They have mostly ruled out lymphoma and he is pretty confident that the enlarged lymph nodes in her abdomen are not creating pressure that would be causing this either but the final radiology reports won't be done until tomorrow.  At first glance, there wasn't a glaring problem.

So, what does that leave us?  He isn't ready to rule out a blood clot.  We have to go back on Friday for more testing and a Vascular Ultrasound.  There is a condition that happens when a clot travels through a vein or artery and causes extreme swelling.  This may be what is happening.  The clot may have already passed. Her bad leg is 6 1/2 cm bigger than normal so that is a problem.  He is also considering a malfunction of her nervous system and it is perplexing that all of a sudden, her resting heart rate is up over 100 and her blood pressure has dropped.

I was surprised that he has done so much investigating in the two months since we saw him.  He has contacted a Molecular Geneticists to discuss Shelbie's case.  He is considering a test for a rare disease similar to MS that causes a problem with the myelin covering of the nerves.  They are testing her clotting factors, autoimmune markers and a host of other things.

It is frustrating that we had to leave without a solution or a treatment.  It is so hard on Shelbie to hear over and over that they don't know what to do.  Could this be her new normal?  We will be patient and hope that Friday will bring answers and maybe things will resolve on their own...who knows.


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The heart of the matter

I wasn't going to write tonight because Shelbie and I are leaving before the sun even considers rising for the day but it's been one of those days.

My heart is heavy but my soul is light.

These weeks are not passing easily and today was hard.

We had to scramble to get Shelbie's transfusion done and since UPS messed up...AGAIN and delivered it to the wrong house...we got a late start and that is why I'm still up.  The nurse was gracious enough to come all the way up here to get things started at 6pm and she stayed for a couple of hours and then I had to take over.  It's not a big deal but it's still going strong.  I have to take her vitals every hour so that means I stay up until after midnight when it will finally be done!

Spencer got word that his friend was killed in a hiking accident.  He worked with him at Snowbird last winter.  The young man will be leaving behind his 6 year old daughter.  It hit pretty close to home tonight and just a week after another Snowbird employee died in a hiking accident in Oregon- Annie Schmidt, the daughter of the famous pianist, Jon Schmidt.  So, that is hard to watch your kids lose someone they were friends with.

Then little things today that were more annoying than anything like the vacuum dying, the washing machine dying, cars dying or trying to die, missed deadlines, blah, blah, blah.

It has occurred to me recently that this world is in trouble.  People are in trouble.  I look around and I see hearts failing humanity.  I see people who are nothing but angry and narcissistic and  caring about no one but themselves.  I see friends, finding truth in all the wrong places, completely abandoning the once strong Faith they had in God.  It's heartbreaking.

I have reflected back on my own weaknesses this past year, the times when I wanted nothing more than to throw in the towel.  My Faith never wavered but certainly my stamina did.  I know that I have to be strong and immovable for my kids.  I know that they look to me for their strength a lot of the time.  I know that if I can show them what it is like to trust in God then they too, will learn to do that and never falter at the first sign of trouble.  Everyday, I have determined to have an adventure with God and believe me, he has his work cut out for him because there are no human answers to the problems we face.

But, despite our variety of testing today, I have seen the tender mercy and kindness of many.  I have witnessed God blessing us through the charity and love of others today.  People have done things for me that only God and I knew I needed.

I've also been inspired by one little 10 year old boy who is fighting an uphill battle.  He  has Shwachman Diamond Syndrome, the disease we thought we had for 20 years.  He went into the hospital nearly 100 days ago for a risky bone marrow transplant.  He has no matches in the registry so they used his mom's stem cells.  Sadly, after all the chemo and transplant, they found out it failed.   They prepared him for a second transplant using his dad's stem cells but he faced serious infections including encephalitis, kidney failure, and a million other problems.  He is now in ICU and unresponsive and facing yet another infection.

On the same day they transplanted the new cells, his kidneys started failing and they started dialysis.

If you want to be moved and inspired, visit their blog and maybe say some prayers for little Rowan.  He is truly on a special mission.  He is bringing more people than he knows to God.  His mother has an amazing strength and spirit about her.  I promise, you will leave their blog with a change of heart, a new outlook on life and a little extra desire to live as close to God as you can.

Each day, his mom writes out scriptures for him.  Each day, he honors another child with their picture and offers up his own fight for them and they post it on Facebook.  He softens the hard edges of the day.



http://rowansstory.blogspot.com/

Rowan is my hero this year.  I knew from the moment I met them in our support group that he was a spiritual giant.  I guess in a lot of ways, I have gained my second wind for facing our own challenges, because of him; his family.  So, this week, I am going to honor Rowan and his example of Faith by being faithful and courageous myself.   I am going to continue to pray intently for his healing and recovery.

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Monday, October 24, 2016

Boarding the Crazy Train

This crazy train we are on is gaining momentum.

It's hard to believe we are clear back to square one with Shelbie and the mystery disease but that's exactly what it feels like.

I texted our Immunologist this morning to see if he could weigh in on what he thought we should be doing with Shelbie.  I even sent him pictures of her swollen leg.  He was very quick to tell me that this was not normal and probably not cellulitis but he felt that staying on the antibiotics was the best thing to do until they could sort things out.  He contacted our Oncologist, they had a meeting of their minds and then gave me instructions to contact our Oncologist's nurse which I did.

Their feeling is that the enlarged lymph nodes in her abdomen and around her aorta have grown and are now putting pressure on her vascular system and that is creating the swelling in her leg.  They don't think it's likely a delayed response from her surgery earlier this year.  That could be and I thought about that last night but it still doesn't seem to fit.  And of course, whenever anything like this happens, they always go back and pull the Lymphoma card as another possibility.  That doesn't really seem too likely in my head either but it's hard to judge.

Shelbie managed to do two photo shoots today despite the ongoing and growing pain.  Her leg isn't really much better but she has kept compression pants on all day so it doesn't look as bad at first glance.

They went back and forth about having her admitted either here or down at Huntsman.  If that was the plan, I was really pulling for here.  I love Huntsman but we are little fish that drown in that overwhelming hospital.  We finally settled on going down Wednesday and they will run some scans and tests and see what is happening inside her and we will see our team as well.   After their assessments, we will decide on the next step.  It's anybody's guess at this point.

I'm hoping to be home late, late on Wednesday because I don't have anyone to cover for me at work so regardless if she is admitted to the hospital down there or I get to bring her home, I will be home that night.  In theory, we will be going back down again on Friday for Spencer's heart evaluation.

Not exactly the week I was expecting or welcoming and I really can't believe we are back to these issues again.  How disturbing.  Shelbie is in pretty good spirits but she is notably tired and in pain.

So, here we go...buckle up!


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Sunday, October 23, 2016

Trouble


Trouble is brewing in our neck of the woods.

I did end up having to take Shelbie in to the Urgent Care this morning.  They sent her on up to the hospital for an ultrasound because her leg is in terrible shape and they thought she had a blood clot.  The ultrasound was negative for a blood clot so they sent us back to our doctor and they decided to treat it for cellulitis.

Cellulitis is a bad, bad deal but, I'm just not convinced it's going to be so easy.  Not that cellulitis is ever easy but this does not seem like cellulitis to me.  I think something is very wrong with her entire lymphatic system and I'm not sure this isn't going to end her up in the hospital in Utah.  I'm pretty anxious about it actually.

Before leaving the clinic, they gave her a shot of Rocefin and sent us home with antibiotics.  They said if it isn't significantly better in 36 hours, then we needed to go to the ER.  It's not any better.  I realize it's only been a few hours since we got home around 2 this afternoon but it is still increasing in pain and size.  Tonight, she is running a very low grade fever but hasn't had one until just a bit ago.

This issues is on the heels of the new, large lymph nodes that showed up under her arm just a couple of weeks ago, on the same side of the body as this leg problem.

I hope I'm wrong about this.  I really do.  I will feel so bad for her if this gets complicated.  She has been extremely busy with work, like 12-15 photo shoots a week.  Just swamped and that trend is continuing clear into December.  She is so good at what she does and people beg and plead for her to make room for them.  There will be a mountain of disappointment if she can't work for a few weeks.  It will be a sad deal and she will be the most upset about it.

There are other complications as well.  Shelbie has a connective tissue disorder that we don't talk about much but it means she has very little collagen to keep her skin, blood vessels and joints tight.  It is a big problem in her joints because she is prone to dislocations.  In her skin, she gets stretch marks like crazy.  This swelling is breaking apart her skin in horrible ways!  There is no way for her skin to recover even when the swelling goes down. No young woman wants to deal with that.  I have tried to keep her leg wrapped up tight in compression bandages but that isn't working.  And, I fear all this extra fluid is going to start stressing her heart.

It's way more complicated than it seems and tonight, as I sit here alone, it feels an awful lot like a rerun of this past February when her nightmare for the year got underway.    


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Saturday, October 22, 2016

A not so perfect week

Things have been fairly stable around here, all things considered.  Sam is doing well post biopsy and still no more results than I've already reported.

Other than some heart issues Spencer had last Sunday, he is status quo.  I got a call around 10am from the monitoring company to once again say, "Is your son doing okay?"  Spencer was at church so I really had no idea.  I think that is such a stupid question.  They call because they obviously see a problem going on in his heart so clearly, it's not okay.  They will never give me any information other than they needed him to get back to the computer base at home and download the information from the recorder so they could look at what was happening leading up to the 'event'.  I immediately texted Spencer to make sure he was still with us. I'm not going to lie, my adrenaline was racing through me and I half wondered if I would hear back from him.   He was okay and came right home but we haven't heard anything since.

So, with the home front ticking along, it was a perfect time for me to continue to be sick!  I thought I was over the worst of it Monday and Tuesday but in the middle of the night leading into Wednesday, I was in rough shape and have gone downhill since.  Whatever I have now is altogether different from what I was sick with last week.  I tried to keep working and did okay but by Friday morning, I was barely able to function.  I went to the house that I clean on Fridays and she suggested I come home.  I hate to cancel and put people off but she was right, there was no way I would have made it through that job.

The kids were all working and going in different directions on Friday, so late afternoon, I literally dragged myself into the doctor's office.  Never before have I laid on the table in the exam room in the fetal position wishing I was dead!  When the doctor came in, I tried to sit up and he said, "Judging from your appearance, you better just lay there."  They aren't entirely sure what is going on.

I have not been able to keep food on my stomach in three days.  I do not handle nausea well.  I would rather staple my lips shut than throw up.  I haven't been eating much at all.  Today, I attempted a smoothie and some chicken but that didn't end well, all combined 6 ounces of food.  Then tonight, I tried to eat a few crackers and broke my stupid freaking tooth that was infected last week!  I am so angry.

I'm not sure what is happening to me but it's not normal, not the stomach flu.  I'm guessing maybe an ulcer and I've even wondered about Mono.  I was helping a girl a couple of weeks ago and she ended up having Mono.  I sort of have those symptoms too!  Bleh!

I'm hoping that I can feel a little bit better tomorrow.  This is my third straight week of feeling rotten.

Shelbie's had some issues come up we weren't expecting.  She had those large lymph nodes show up under her arm a couple of weeks ago, now her leg, on the same side as those new lymph nodes is swelling at an alarming rate.  In just two days, it is noticeably enlarged all the way down to her ankle and she can barely stand to walk on it and impossible to even touch it.  It's pretty painful.  Tonight, I wrapped it up tight in compression bandages and gave her some baby aspirin but I'm guessing we have an ER visit in our near future.  It could be lymphadema or a blood clot.  The plasma product she gets has a black box warning for causing blood clots.  It's probably not something we are going to sit around watching for too long.

I pray I can get out of bed tomorrow long enough to take care of her if I need to take her to the hospital.

Man, things were going so well for the kids.  They weren't exactly great but we seemed to have a handle on things.  Shelbie has been doing well for so long so this is disappointing.   We will see what comes of us tomorrow.





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Thursday, October 20, 2016

Epic Memory Fail

If memory serves me right...

Well, it doesn't.  My memory is at an all time low.

I am always in awe at people who remember everything.  I know a few people who not only remember everything but celebrate all those 1st moments that happened so long ago.  They remember the day their second kid had his first taste of Kale, the precise time and what plate it was served on and every year on that same day, at that same time, serve up Kale on the same plate, to celebrate.

I knew when I was a young mother, that I was not going to be that kind of mom, so I bought one of those Mom calendars for the mothering challenged.  At the back were a bazillion stickers to celebrate all things related to raising a child that you could put on the corresponding date.  1st cry, 1st burp, 1st tooth, 1st belly crawl, 1st step, 1st rice cereal, potty training events, birthdays, half birthdays, it's almost your half birthday, 1st words, 2nd words, 1st curse word...no, it didn't actually have a sticker like that.  It did have some stickers to remind you of doctor appointments, well baby checks...the well baby checks never got used and I had to make my own reserve of doctor appointment stickers at about month 2 of Shelbie's life.

The calendar worked out great for Shelbie.  I dutifully recorded everything like a good mom does.  By the time Spencer came, the stickers were hit or miss.  I got the major milestones I think.  To save myself some distress about this pressure to record every second of their life, I just decided to feed him nothing but milk til he was two.  After two, it's all old news until kindergarten really.   When Sam showed up,  there was no calendar, no stickers, no care in the world really.  In fact, I think the other two calendars were sold at a yard sale or dropped off at a thrift store because who doesn't want to buy an already stickered up, milestone calendar that is a year old?  I think it made sense at the time.

I'm not the only failure, I actually have a friend who forgot to take pictures of one of her daughters for the first two years when she was a baby, so 'borrowed' some extra pictures of the older daughter and labelled them with the younger daughters name!  Ha ha...genius!

Anyways...that's not the story here.

Last week, when Sam was at the Neurologist's in Utah, they wanted to know what my pregnancy was like with him, how his birth went, how much he weighed, any complications, when he started crawling, walking...all that stuff.

In my defense, I was sick and very tired.  My mind was completely blank.  Panic immediately showed up to chase down those memories.  I couldn't for the life of me remember when Sam crawled or walked or even said his first word.  I know he was slow to do all that because we had a person coming to the house twice a week for therapy kinds of stuff.

So, not to look like a total loss of a parent, I said, "Well, that was a long time ago!  He was slow to do everything."

The Resident said, "If you had to say, how old was he when he walked?"

I seriously had to ask myself how old babies are when they walk...I was arguing with myself in fact, and then just blurted out, "Oh he was a little slow!  8-9 months."

"Wow!" she said, "I'd say he was a real over-achiever!  That's impressive!"

Then it dawns on me that babies don't walk at 8 months!  He couldn't even fist Cheerios!  So I quickly said, "Oh well, you know, slow compared to his siblings.  They were crazy, early walkers those two!" and inside, I die a little...of laughter and Sam's looking at me with a puzzled look on his face about to say, "Who are you and where is my mother?"

The next question was..."When did he start saying his first words?"

Again.  Nothing.  I'm starting wonder who I am anyways and who that kid was sitting across from me!  Maybe he wasn't even my kid!  Maybe I've been abducted and had my brain erased from my past life as a Saudi Arabian Princess!  I don't know...I was lost. I could see a white flag being run up the pole in my head so I just said, "Two."

And, here we are, in a brain doctor's office and ironically, Sam's brain is just fine but mine is not! And...all of my less than intelligent lies are now on his permanent record!
And...another irony of the day?  When we first started talking with the Resident and I was telling her what brought us here in the first place, she interrupted me somewhere in the Telomere conversation and said, "What is your position?  Nurse?"

"Huh?  No.  I'm just a mom."
"Oh, you sound like you really know what you are talking about.  I thought you worked in medicine."

Hilarious.  Apparently, I traded in my sensible mom brain for something a little more concrete and scientific.   I really had her fooled!  I have no idea what I'm talking about!

Don't be jealous.  I know you wish you could be me.

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Wednesday, October 19, 2016

Lots of Adulting Today

Big day today!  I had to be an adult and do adult things like close on my house refinancing!  Yay!  I am so relieved to have that done.  It was a pure act of God that I was able to do this, all things considered.  The first part of September, I woke up on a Friday and had an overwhelming feeling to go talk to my bank and see if they could help me sort out some financial issues.

The mortgage specialist I had was magical!  It was her idea to refinance my house.  I didn't think I had a snowball's chance in you know where of getting approved but just like that...I was!  In the process, I was able to put an entire credit card of medical debt into my new loan, take off 6 years from the length of my mortgage and my payment only went up $30 and my interest went way down. Not only was she smart and efficient and pure genius, she was so compassionate.  When she told me all of this, I couldn't stop crying.  I sat in her office and unloaded about 8 years of struggle.  Even she was fighting back the tears.

I had to have letters written and things done while I was in Utah at the hospital and she was so kind to even write them up herself so all I had to do was sign it.  She was amazing.  Let's just say her name is Jeanne W. I'm not saying that is her name but for the sake of the story...

While I was at the Title company today, I just felt like I shouldn't be left alone to sign an entire book worth of documents.  The girl was flying through them so fast and rambling off financial words I had no idea of their meaning.  Oh well, that's how I roll...a wing and a prayer.

I took another leap of faith and called the Administrator at our local hospital to beg for a way to do bone marrow biopsies here at home.  It looks like it might work out since they have a new partnership with Huntsman and University of Utah.  They are so kind to me at our local hospital...really nice.  They always listen to my concerns and do anything they can to help me.  My pestering several years ago is what spurred them to bring Oncology care from Huntsman, to our little town!  It's the best move ever!   I should have done this before I committed to the boy's biopsies and at dinner, I had to apologize for not thinking of this sooner.  They were kind to me!

They do conscious sedation as well but she said they didn't have a problem doing it in the OR or anything I wanted. ( It's just a sad fact that the world of adult medicine doesn't put you to sleep for a bone marrow biopsy. ) They met with the CEO of Huntsman's this afternoon to discuss our situation and tomorrow they are meeting with the traveling Oncologist to get his feedback.  I'm so grateful for their efforts at Madison!  They are awesome!

Also today...Sam had his brain scans.  I will be anxiously awaiting those results.

Some of Sam's bone marrow biopsy results came in today...He did have some abnormal cells show up that they are guessing are Hematogones which are usually somewhat benign if there aren't too many of them but he had over 5% and until the FISH studies and Cytogenetics are complete, we won't know for sure if they are Hematogones or something more serious like a sign of Leukemia or Lymphoma.  We have seen a small percentage of Hematogones before and they wax and wane so I'm not too worked up but a little anxious for the remaining and final results.  I'm sure it will be okay.  There is always that little evil voice that tells me otherwise, my naysayer side...and the fact he has those two new lesions in his lungs stirs all that up again! Bleh... His peripheral counts look good and with the liver enzymes coming down, it really should be fine.





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Monday, October 17, 2016

Affordable Care-less

As much as I hate dealing with finances and insurance, I had to today.

For just over 2 hours, I was dealing with insurance alone.  The girl I was talking to forever was very patient and also very apologetic that the company she represents sucks!  The sad thing is, it sucks less than my other choices on the exchange.

I ramble and rant from time to time about how much I hate insurance...of any kind really.  You pay so much and get so little in return.  Just so you know I'm not exaggerating and making numbers up...here is what I received today from my health insurance company, on one child- Spencer.


These numbers are after I met our $2250.00 deductible on one child.
Total charges this year for one kid- $35,589
Amount not covered by insurance- $19,614.74
Amount insurance has paid- $14,344.80
Patient Responsibility- $5,527.08 plus the co-insurance of $1629.48 I have to cover

There is still another $12,000 yet to be processed and they are already fixin' to deny some of that! These figures don't include any pharmaceuticals or my monthly premium.  And, there are still two months left in the year, and next year, I start all over again.   So, with my responsibility left and the amount I have paid in deductible and co-insurance...I owe over $8000.

$17,731.00 for a bone marrow biopsy!  One biopsy.  Without sedation.

This...is why I can't sleep at night.  This is why I work a dozen jobs.  This is the reality of living with a chronic disease in this country and this is why this country is in trouble.  My little country is in trouble.  How is it possible that everyday choices now have to be made with consideration of life and death in a literal sense?

It is time to sign up for another toxic year on Obama's affordable healthcare and to be honest I'm not sure what to do because I can't afford another year of this.  Sadly, this disease is progressive, it's not likely we are going to have a quiet, easy-going 2017.

I'm sure, like I do every year, I will put it in God's hands and trust that somehow, it will work out, but that takes an enormous amount of faith and hope. I don't advertise these numbers for pity or sympathy and surely not hand-outs or go fund mes.  I just think this country needs to wake up!  An election is 20 something days away and we are being riddled and bombarded with lies and deception.  The media is side tracking people with made up stories and variations of truth and we follow along like sheep in the very direction they herd us.

I don't even understand how we ended up here.  How any of us ended up here!  It is the saddest thing in the world to see a President and would be Presidents care more about their own agenda and less for their country that was once great, and good and kind.  They care less and it shows.


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Friday, October 14, 2016

I hate bone marrow biopsies...

If I had any fight left in me, I would start a crusade to stop doing conscious bone marrow biopsies.

Today was a rough one for Sam.  I'm probably a little sensitive and whole lot short on patience but today's bone marrow biopsy couldn't have ended soon enough.

The room where it takes place is about 14x14 so about the size of a bedroom.  One whole wall is cabinets and then a hospital stretcher and a couple of side chairs.  Only, since we are at a teaching hospital, that room filled up pretty quick.

The medical staff didn't stop pouring in...I felt like we were being punked, like how many people can you stuff in a room...Something like this...

There were two nurses, one training the other, three Nurse Practioners.  One who's been at it a long time and is the one we are familiar with, the other two were down from the transplant unit...in training to do bone marrow biopsies.  Then, there is a Medical Assistant who runs errands for everyone, she's like the concierge.  A sweet bubbly little blond.  Nice girl.  Everyone was really nice.  Oh, and then in rolls the Hematology tech with a large cart with a million or so slides laid out on white towels.

There are trays and monitors and humming and beeping, non stop beeping because Sam's heart beat is a mere 34 bpm and every monitor on earth thinks he's dead or dying and won't shut up.  There's idle chatter and you can vaguely smell what everyone had for breakfast on the morning commute.

At the first injection of lidocaine,  his heart rate sky rockets to 65 bpm and the one NP says in a loud voice, "Hey, look everyone!  We fixed his bradycardia!" The whole room erupts into laughter, except me.

Sam had to have the girl in training do the biopsy.  She needs to go pump some iron before she does another one of these.  She struggled, and at one point, I think she tried to channel her hot yoga self and closed her eyes and just stood there with this 8" hollow needle half in his back while she took some deep, slow breaths.  She did it.  Gotta hand it to her, it didn't seem like an easy task with so much chaos going around.  I did want to offer up a little advice...she might want to put her extremely long hair in a pony tail because it kept falling in her face and not wear a fancy infinity scarf on biopsy day cause she was sweating!

Meanwhile, the nurses are training away, the other two are talking about the most recent hospital policies and the tech is interjecting into everyone's conversation and my eyes are peeled on Sam as I see him wince and jerk and groan in pain and no one but me seems to notice and I feel like I'm about to go postal.  The chaos and noise was killing me and no one seemed to be paying attention to Sam.

I finally said, "Sam, if you need another push of Fentanyl and Versed, you have to ask."

Then, someone finally says, "Oh, is this hurting?"

They gave him so much medication and he still struggled.  One guy said, "He's going to sleep for days, this is a knock out dose."

Nope, he jumped off the table, not even dizzy, just 10 minutes after the bandage was placed.

NIH had called and they wanted samples as well.  When they asked me, I said it was fine because I thought they just wanted slides from the marrow.  They wanted an extra sample of tissue...that meant three times, they had to go in his back. Unbelievable and the sample for NIH had to be twice the size that is normally needed.  I was so bugged!

As we walked to the elevators, Sam said, "I am so angry right now!  How is it okay to do this to someone awake?"  As soon as we got in the car, he turned on his music so loud...'Guns in my head...' Some crazy screamo song.  He was one angry boy and seemed to have no traces of Versed or Fentanyl in his body.  It was not a good morning. So different from Spencer's experience.  His was calm and methodical, Sam's was like a frat party.

Before everyone but the nurses cleared out, I said, "This is not going to fly for Shelbie's bone marrow biopsy.  We are going to have to figure something else out."

On the upside...Sam's liver enzymes are coming back down which is a big relief.  That's all we know for now.  Tonight, he is managing the pain alright.  He's a tough kid like his brother.

Even at Seattle Children's, my least favorite hospital for biopsies, they at least gave them Propofol which knocked them right out and 20 minutes later they were off the table, staggering out.  It makes no sense why they can't do that.  Every time I ask for a reason why they have to be awake, they tell me it's because they need to be able to communicate with them...They had nothing to say to him today.  It's a pile of rubbish. It's not like this is brain surgery.

And again...if you are doing a procedure while your patient is awake, you better zip up the commentary and stupid remarks and dumb jokes.  The patient is probably pretty scared and they don't want to hear your mouth running.  They want to be reassured and know that someone hears their little wimpers of pain.  Arghh...

I did see something I've never seen before...Spicules.  Sam's marrow just glistened like it was full of super fine glitter.  It was full of spicules.  The spicules that glitter are actually tiny fragments of bone which means the sample came right from the center of the bone and was a good sample.  So, that's awesome.  Hopefully, we get some good stable results.

Well, I'm going to nurse this fever that won't go away!
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Thursday, October 13, 2016

Neurology Updates

Day one has come to a close.  Sam did great at the Neuro Opthalmologist's at the Moran Eye Center.  His eyes are pretty much perfect.  He had to have a ton of tests which surprised me a bit.  One such test was an angiogram to look at all the vessels in his eye.  In Dyskeratosis Congenita, the vessels can just die off and leave parts of the eye without blood flow.  Sam's vessels looked good and no sign of any venous malformations.

So, clearly, his vision loss is not coming from his eyes.  That is great news.  They did note that he has a minor Pannus developing around his cornea.  This is a common eye problem in DC kids.  The epithelial cells can grow over the cornea.  He has a start of that happening but it's minor at this point. We will continue to watch that.

He is having migraines with auras but they aren't typical and last longer than a typical migraine would.  So, there are a few more tests we need to do.  He will have an MRI with contrast to make sure that there are no AVM's in his brain that would cause the vision loss.  We will do the remaining tests back home at our local hospital.  For now, they feel it is a neurological problem and if there are AVM's then that is likely the cause.  So...it's not awesome and of course they don't have good options for prevention or treatment.  We'll wait and see what comes of the MRI.

We had an amazing Resident and the doctor, when we finally saw her, was great as well.  Of course, they hadn't heard of DC before but while Sam was off doing tests, the Resident was reading research articles and quickly became an expert in DC and Opthalmology issues.  I was really impressed.

We also need to do a little more work to determine how to handle the genetic mutation of an eye disease Sam had show up in his mitochondrial testing- Lebers Hereditary Optic Neuropathy.  I didn't think to bring those results so I will fax them down next week and they will look into that more.  His optic nerve looks great so it's obviously not causing any problems for him.





Tomorrow morning, Sam has his bone marrow biopsy so that will be a tough one.

I finally caught up with NIH this morning.  They have requested blood work from me to test my telomere length.  It makes me a little sick because I just don't want to go there.  She said they haven't completed the Exome sequencing yet.  The team was also asking if we would be open to spending at week at the facility in Maryland to meet with each member of the team.  So, it will be interesting to see what comes of that.

I am so sick and worse today.  I am afraid that they won't let me stay with Sam tomorrow since he will be in the transplant unit and sick people aren't allowed to be hanging around unless they consent to letting me wear a mask.  We'll see.  That is not going to be good if I can't be there for him.  It's been years since I've been this sick and I'm a little grouchy about the timing of it all.





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Wednesday, October 12, 2016

Whew!

It's been quite a day!

I woke up with a kidney infection and an ear infection!  Lucky me!  I have had a toothache since Saturday but being the stubborn girl I am, have been treating it on my own with snake oil and other myths because you know...you can't spend any less than $25,000 on a single visit to the dentist and nothing can ever be done in one visit!  It takes like 12 visits! Ain't nobody got time for that!

So...after the nurse arrived and Shelbie's plasma transfusion was under way I decided to run down to the urgent care.  I figured I could breeze in and out and no one would miss me.  It took nearly two hours and the doctor wasn't going to let me leave until I confessed to my lack of self care.

I can take care of myself but I don't always care about myself.  There's a big difference.  Anyways, the infection from my jaw has spread to my ear.  It's not just any ear infection.  It's in the ear that I had all the bones replaced with prosthetic bones 3 years ago.  Titanium pistons and fake ear parts don't like being surrounded by infection and pressure and neither do I.  It hurts and I like to complain about it and on top of the pain, I can't walk straight because I am so dizzy!  Who knows why I have a kidney infection, I guess because God knows it's going to take something more than just a silly tooth abscess and ear infection to slow me down!

I tried three times to get my antibiotic prescription but they kept saying, "10 more minutes."  I didn't have 10 more minutes to wait on them so I have been suffering through the day.

That isn't the story though...

I really like the doctor at the urgent care.  I have always liked him but don't go very often.  The last couple of times I did go, his partner was in and he's a nice guy too.  But...let's call him Dr. Gillette.  He was listening to my woes and said, "Aside from the fact you are sick,  I see something else in your eyes."

"What?"
"You are stuck aren't you?  You are on the verge of throwing in the towel right?"
With that, and a weak 'nod',  I burst into tears.  I am exhausted and I haven't eaten in three days because of the pain in my jaw so that is never a good thing.

"Do you know how I know that?  I have had the same look in my eyes.  I recognize it." he offered up.

He went on to ask about the kids and then shared some very personal recollections about his own 'look'.  He didn't go into details at all, just shared his own feelings of exhaustion and rock bottom moments he had a few years ago.

It has been so long since I witnessed a medical doctor taking thought for the whole of me, not just the problem at hand.  That just made me cry even more because he was so tender.  Even he was crying and for 10 minutes, we were both crying!  He made me promise that I will never not go to a doctor because of money, that he will always take care of me and my family no matter what the circumstances are.  Doctors like him are few and far between.

I was blown away!  I got home and cried some more when I told the nurse and Shelbie what had happened.

I was only home a couple of hours and got a call from a young girl who is here from Pennsylvania, going to college, and she was really sick and needed a ride to her doctor.  Her brother and Spencer were mission companions and are still best friends! I could tell she was not doing well so I ran to get her and that took the rest of the day.  She had to have IV's and all sorts of stuff but she is back at her apartment now, hopefully resting.  And...I finally made it to my pharmacy just before they closed to get my medicine.  I missed Shelbie's whole transfusion but I trust the nurse so much and she is so great, I knew everything would be fine, and it was.

Tomorrow morning, Sam and I leave for Utah where we will have two action packed days at the hospital and wrap it all up with his bone marrow biopsy on Friday.

I am tired and I am praying that this medicine works super speedy because I really need to be showing up with my 'A' game and be available to support Sam.

All is well that ends well...or so they say.  Tomorrow's another day of awesomeness!
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Tuesday, October 11, 2016

Courage

For some reason, I really like people to think I can handle my life.  I mean, don't we all want to look and feel competent, not only to those around us but to ourselves?  I'm not referring to some form of vanity and pride as in...look at me, I'm so good at managing my trials.  Yay me!  Because...I'm not that good.  I spend most of my life picking myself back up and not gracefully either!

Just simply, the feeling of moving forward and managing the hard stuff as opposed to laying in bed in a depressive state of revolt at the fiery tribulations.

Or, maybe it's that I want to have courage.  I want to look courageous as opposed to cowardly but then I heard this definition of Courage.

Courage- "to embrace the true story of one's heart"

And I realize, I'm not courageous at all.  I hate embracing my story.  When I try, it's painful and I feel like I'm wearing a pair of skinny jeans I was poured into and forgot to say 'WHEN'.  It's true.

As luck would have it, I was somewhat prepared for this act of courage I'm about to share...

After a doctor's appointment, I began to run a few errands.  On the radio was a devotional and I don't really know who the speaker was but I pulled into the DMV parking lot to write notes on the back of my bank statement; the one that reminded me of my pathetic existence in life.  He was talking about spiritual vulnerability and answering the question that Nicodemus asked of God, "How can these things be?"- in terms of a man being born again.  The speaker went on to discuss how even the greatest of the greats had a moment when their inadequacies were exposed; Mary!  Christ's mother!  She was nothing.  A nobody.  A lowly handmaiden and then all of a sudden she has to deal with a pregnancy and she's not even married! And then he talked about Enoch and even Joseph.

The whole point was that these people had to admit they were nothing but with God, became something.  They were spiritually vulnerable and courageous.

I sat in my car thinking what amazing thoughts this guy was sharing.

Well, my next stop was the pharmacy to pick up a prescription for Shelbie.  Her underarm is now full of lumps. In just three short days, one became many.  The doctor wants to try her on antibiotics to see if he can get the swelling down in her lymph nodes so I was picking that up.   The Pharmacists said, "I have a few for Spencer as well, do you want to get those?"

I got a rejection letter from my insurance company saying they weren't going to cover his lung medications so I was surprised.  But sure enough, they were there and the insurance company did actually approve them.

The Pharmacists got everything rung up and it was over $800!

Normally, this is where I would inject some clever little sarcastic comment and brush it off and sound like I have this all under control.  And I would hear people say in some distant day..."You are so strong!"  and I would say in my heart, "I am not strong at all, you have no idea.  I'm witty, not strong. I'm a cop out."

Instead, my eyes filled with tears and I knew there was no way I could pay for the medicine and there was no way I wanted to be crying in front of the entire pharmacy and grocery store I had to make my way through.  That little corner of the store was spinning and I was finding it hard to breathe but even harder to say what needed to be said.

"I'm sorry.  I can't afford to pay for this." and at that, I felt the burning eyes of everyone else in line as they watched him take it all out of the bag.
"Doesn't he need it?"  The well meant Pharmacist asked
"Yes, he sure does but I just don't have the money.  I'll find some money and come back for them.  Is that okay?  Maybe in a couple of weeks I'll be in better shape."  Not in a couple of weeks or months or years will I be okay.

I can't believe I had to choose.  I had to choose between medicine for my son and paying my bills.  Not bills from something fun we did like a trip to some exotic place...but bills to keep a roof over our heads, food in their bellies and clothes on their back.

As I made the walk of shame to my car and thoughts of...what will I tell Spencer who left for his 16 hour work day, on a dusty farm today, with an Asthma attack underway as he walked out the door...tossing through my mind, I had a hard time reminding myself why I should bother to try and some catastrophic accident to do us all in seemed far more advantageous than one more day of this.  Yes, that is what I thought and it's not the first time that thought has crossed my mind...since I'm being courageous here!

The next thought was that God was in the purpose of the day.  He placed me in my car, at a specific moment to hear some well thought out, strung together sentences about being spiritually vulnerable. I heard the already familiar stories of already familiar scripture people and how they went from nobody to somebody by being spiritually courageous; by asking the question..."How can these things be?" and then watching the wonders of Heaven unfold and divine purposes made known.  Hearing about these stories today, somehow felt different and important to me.

While I'm sure I will eventually stop crying and the bitter taste of shame I am gnoshing on will give way to something less salty, and this experience will soon be yesterday, it's not easy.  It's not easy, even impossible to see how I can sustain the expense of this disease.  Not only the monetary drain but the emotional drain as well, I will continue to be an active participant in our suffering and continue to ask God daily...'How can these things be?' and then with my meager effort to be patient, as patient as a flawed human can be, will wait for answers to come.  Viable, long term answers, answers that I know will come with enough time, enough faith, enough hope and enough faltering...because that's what I seem to do falter and flail and try again.

These are the kinds of days that we really face around here.  More often than not and it's hard.  I wish I could say something clever and witty but today is just hard and today, it took a lot of courage to be me.


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Monday, October 10, 2016

Insults and Inspirations

This post is all about random happenings the past few days.  We are gearing up for Sam's two marathon days in the hospital and I have a bazillion deadlines and I just can't seem to get feeling better.  In fact, this low grade, rotten feeling has been dragging on for so long, I don't remember what energy and health feels like anymore.  I hope this isn't my new normal.

Tonight, I had to run into the gas station after work to grab something and the clerk said, "Hey, do you have family in town?"
"Nope." I was not in the mood to converse with him or anyone else so I just left it at that.
"I had a reason for asking you know. Because I was going to tell you that there is an old guy that comes in here every night at the same time and he looks like your twin so I just thought maybe you were, well, twins. "

What the heck?  I know I look tired and run down but seriously...an old guy as my twin!  I had nothing to say to that and walked out.  What a punk.  Honestly though, I'm a little curious so I may start hanging out at the gas station every night just to see what I could possibly have in common with some random old guy.

The world is so full of demoralizing, discouraging chatter.  This upcoming election is not only a three ring circus when it comes to the candidates but the average 'Joe' isn't acting in a very becoming way either.  I'm sort of sick of it and if you try to text me with your outrage, you will be met with silence because I just don't care.

So, in the world becoming ever more dark, here is a little light, a little hope, a little reason to keep on keeping on.

I listened to the most amazing TED talk this past weekend by Isaac Lidsky...I thought I would share his inspiring thoughts. You should listen to it...the guy became blind in his early 20's but his rap sheet of accomplishments post blindness is awesome and amazing.

"What we see is not universal truth."  I would add that what we hear is not universal truth either.

"A hill seems harder to climb if you are wearing a heavy backpack."  That is a deep thought.

Here are few more of my favorites...

"Be the living expression of God's kindness." Jeffrey R. Holland

"Become personally involved in your suffering" Evan Schmutz

"Sometimes, we can learn, study and know.  Sometimes, we have to believe, trust and hope." M. Russell Ballard


Each of these have been good reminders.  The weekend has been rough-ish.  Shelbie found a new tumor under her arm.  It's a little disconcerting and she has been pretty worried.  I'm not certain what it means and I'm not entirely sure who to ask about it...oncology or immunology.  We are waiting and watching and of course, trying to be personally involved in the suffering of it all.

I got an email from NIH this afternoon- National Institute of Health...They have something important to discuss with me...cue the sinking feeling!  Maybe it's nothing.  Maybe it's more paperwork...Hopefully tomorrow, we will connect.

Finally...It's Thanksgiving!  Canadian Thanksgiving and I pretty much forgot! So, Happy Thanksgiving to my family...friends.  It's always a good day for a little gratitude.





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Thursday, October 6, 2016

Keeping on

We have found ourselves in a holding pattern.  Tomorrow, was to be Shelbie's bone marrow biopsy and Spencer's device check but the boys are working like mad men in the spuds and Shelbie is booked with work and a boy!  He's coming up from Utah to take her out.  So, of course, she can't cancel that for a bone marrow biopsy!  Priorities...wink, wink.

So, I gladly rescheduled the appointments.

As is customary, I find that I do better during the busiest of times than afterwards.  Having a little room to breathe means a little room to think and that seems to be when I have to work harder to cobble myself together.  There is something to be said about being able to ignore the messy thoughts and fears that get stuffed somewhere to the dark lobes of my barely functioning brain.  

And, by barely functioning, I mean...going to Walmart to get something urgent and then wandering the aisles for no less than 35 minutes until you dig through all the boxes of compartmentalized information in your head before you remember what 'box' to find the urgent thing in that you swore you would remember...oh ya...toilet paper.   Urgent and important incidentally.

It's coming home from the grocery store, putting all the groceries away and then spend 20 minutes trying to find the cottage cheese.  Ahh, of course, in the cupboard with the plates.  I left it out to make something for lunch but it was in my way while emptying the dishwasher...I guess.  We'll never know why I did that.

The stories of my mental decline are great and plentiful these days.  Heaven help me!

The boys had their first day of trucking for spud harvest, yesterday.  It was a 12 hour day and they loved it!  I love seeing them adult!  They are honest, hard workers.  They didn't even get a chance to eat lunch or dinner but they didn't complain a bit.  When I stop for too long to think about all the things that can go wrong with Sam's eye problem and Spencer's heart and his ongoing events, I could worry forever but we start the morning in prayer and get on with the day.





The nights roll into days and the struggles remain the same but we keep on going.  Some nights, I wonder if I will ever understand my purpose here.  This past week in dealing with heartless, annoying people, I've been exhausted.  I went to my room earlier last night to get some writing done and just before midnight, Spencer came in to say goodnight.  He wanted to thank me for being a pretty cool mom.  I'm not sure what I ever do that is so cool, I think because I let them do what they want to do, despite my worst case scenario line of thinking.  My kids are always doing sweet things like this for me.  I'm pretty lucky in the kid department.  I'm glad that life has always been hard.  No good thing goes unnoticed and we know that all we have is each other.

Seeing the boys get to know each other better, now that Spencer is home from his mission and school, is something that keeps me going too.  They are so different from each other but so good together as they balance each other just a bit.  Sam has always been the annoying little brother, 4 years younger.  Spencer was gone for the two years when Sam suddenly grew up. Now they are both amazing, sweet young men.
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Wednesday, October 5, 2016

Compassion Fatigue

"The truth is, we thought he'd be dead by now and you could get back to your regular work schedule but he's not.   How much longer is this going to drag on."

Can you imagine hearing these words from a friend/co worker?  It happened to a close friend of mine that I work with, in reference to the fact that her husband has cancer and was given 6 months to live but 7 months later, he's still here and she is still missing work to care for him.

It took everything I had to not melt in a puddle of sadness, hearing those words that were so carelessly spoken to her.   In my friend's shaky but firm voice, she said, 'He's not dead.  He's just dying.  I don't know when it will end.  What am I suppose to do?'

I don't have any answers but I see this problem all around me.

I've been intrigued with this notion of dying but not yet dead...A few weeks ago, Spencer and I went to a ghost town in Montana.  We've been to ghost towns before but they have been staged and commercialized so it's not that cool.  This one has been left mostly untouched.  The homes and buildings are just as they were a hundred years ago.
















 As we wandered through this town, I couldn't help but think about who lived here.  How is it that an entire town just dies?  How is it that it could have been forgotten? An entire town, just forgotten. And, who was the last one to leave?  How lonely that must have been to just walk away from your life, your house, your town.

I guess I can't help but draw a comparison to this ghost town and living with a chronic disease, especially in light of my friend's experience.  At some point, the chronic story gets old and like my friend says, 'you become invisible, people just think it should be over.'  People pack up and leave your little town of worry and illness and you become the last one living in your little forsaken place.  You try to venture out to the next town over where life is brimming with flurries of industry and activity but it just doesn't feel like you, you don't fit in no matter how hard you try to look okay. The crowds press against you, through and around as you stand there feeling lost, not quite sure where to go or what to do.

Living with a chronic illness is paralyzing at times.  Especially when a doctor so easily times out your life.  You come to accept that as a reality you count on.  When you time out but your still here, it then becomes a limbo of sorts. Living in limbo is hard. You aren't dead...just dying.

I don't think you ever really get use to feeling abandoned but you accept it.  It's a hard thing to navigate.  My friend keeps saying, "I can't blame them for being angry that he isn't dead."

Yes, you can blame them!  What right does anyone have to question God's plan?  What right does anyone have to show anything less than love and compassion?  What right does anyone have to question the sanctity of life and who lives and who dies? No one chooses cancer.  No one chooses any other trial or hardship that besets them yet we treat each other like they had a choice and chose to suffer so they could somehow garner attention and care and so onlookers, arbitrarily assign a life expectancy to the amount of compassion they can show.   I get tired of excusing poor behavior, dismissing our own life God planned for us, to make someone else more comfortable about their self absorption.  That... is giving up your right to live.  I've done it too much myself but it hurts even more to see my friend facing it as well.

Sadly, I see my friend paring down her friends and acquaintances.  You aren't sure who you can trust with your story but you are sure you don't ever want to feel deserted or 'other' again.  It's a fine line we live between belonging and not. A ghost town...


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