Saturday, April 28, 2018

Drenched in Suffering

Sometime last Fall, when my boys' heart's were failing them, I was asked to help a single mother that lived nearby.  I knew bits and pieces of her tragic story and when I say tragic, I really mean horrific.   A marriage of horror you have probably only read about.  A dissolution of a marriage that remains caught up in legalities and other entities, warring for some of the sweetest children you could meet.  I dragged my feet about getting involved.  It seemed like an overwhelming situation and I was caught up in my own feelings of overwhelm.

I felt like my plane was going down and I was struggling to find my oxygen mask that was suppose to magically dangle in front of me.  Until I had that securely attached, I didn't feel like there was room or resources for me to get involved.  I did small, insignificant, physical tasks around her house; things that took an hour or less so I could get back to my own awful stories of hardship.

Selfish...I know.  I knew that then and I know that now.

Something switched for me and I can hardly remember when.   I am now into this woman's life with both feet, firmly planted and rooted in her cause to fight. What started as a 'project' has become one of the most sanctifying things I have done.  To those few people who know what I have done with her and continue to do for her, they think I am some Angel...what a sacrifice...she is so lucky to have you...you are blessing her life.

With my heart full of guilt, I shake my head and reply, "NO, she is my Angel."  "She has sacrificed to let me into her life."  " I am lucky to have her." And, "She is my blessing."

In her darkest moments, when all she wants to do is end it all, I am there and all I know how to do is pray for her and pray with her.  Kneeling together, in a mountain of toys and clothes and chaos, spilling from her heart and head, we feel the peace of our Father in Heaven.  We feel that Christ is not far off, watching her rocky little boat being tossed among the waves and we hold on to each other for dear life.  And in the swells of discouragement and fear, I bear testimony to her that God will fight her battles.  That he is aware and continually making a way for her when there seems to be no way at all out of this.  I tell her everything I know and believe about God.  Her God.  My God. I buoy up her Faith and bind her heart to me, to Him.

And...in all of that lies a miracle.

But, it's not her miracle.  It's mine.

Because I leave there and my own faith is strengthened.  My own resolve is shored up and preserved and I remember that everything I have told her is true.

Yesterday, I sat in court with her as a witness to the madness she endures.  It didn't go as planned, not on any level.  Much like my experiences, the opposite of everything we had knelt together and prayed for in the early morning hours, kneeling in her living room, happened.  It was a blow.  It could have been a blow to her faith but as we walked around the block of the Courthouse, trying to make sense of it all, I watched her see where God was in all of that, in what looks like disastrous consequences. I was so overwhelmed that she could access these miraculous thoughts.

Today of course, the lows are as deep as the highs could ever be tall and I find myself trying to rescue her from the edge of giving up.

Today of course, I am at my own lowest point in life.  I am completely overwhelmed and discouraged and giving up seems the easy way out.  Through the night I found myself searching for pure oxygen that should be dangling in front of my face when your plane is going down.  It has been nowhere to be found.

This morning, I prayed for what to say to my friend...this is what tumbled out.

        "There is a song by Kenneth Cope called Miracles From Heaven.  In it, a line stands out to me, 'He has drenched himself in thy suffering.'  Christ didn't just tip toe into suffering, he was drenched in it, much like you are now.  You can do this, because He knows how to succor you.  He already suffered this for you, and now WITH you.  I know that isn't always a balm of healing in the drenching moments but if you can hold on to that for dear life, through these horribly scary moments, it will be what's left behind.  It's okay to let today fill you with sorrow.  It is a sorrowful situation.  Feel it.  Let it be. Then, watch it recede and there you will see Christ standing in the midst of the storm and know he was always there."

After I sent this to her, I realized it was not for her, but for me...and maybe for you or some stranger reading this who is also being drenched in sorrow.

Today is a day filled with sorrow and that's just what it is.  Maybe it will also be a day filled with knowing Christ is near and somehow in the waiting and wondering what is coming next for my little worn out and exhausted family, we will feel a little healing and a little cleansing in the drenching sorrow that refines our hearts, and draws us nearer to Christ and our Father.

Without a doubt, mourning with my dear friend who mourns daily, lifting her tired heart and hands has proven to be the one thing that has saved me from my own trials and hardships.  There are miracles when we first help those around us.  I can't believe I ever doubted this principle and shied away from her, scared to called upon to sacrifice too much.  Instead, my cup of blessings she has given me, overflows in abundance and I will never be able to thank her for what she has done to rescue me.

Friday, April 27, 2018

No news is bad news

Well, no call from oncology.

I am feeling everything you can imagine...angry, frustrated, annoyed, bugged, sad, worried, anxious.

Basically, I feel like a train wreck and look even worse.  Shelbie is barely holding herself together and I am little to no help for her.  I can't even believe we have to go through the weekend waiting around for bad news or worse news...good news is not even an option.

In other news, I am seeing my Nephrologist on Monday and I forgot I was suppose to get lab work done a week ago.  They called to tell me they had not received any labs.  So, I hustled up to get that done.  While I was at the hospital, I picked up my labs and radiology reports from two weeks ago that the Rheumatologist ordered. I have no trace of autoimmune disease, no antibodies to Rheumatoid arthritis, Lupus or any of the other big ones.   I don't get how that happens because I have 5 years of lab work that shows otherwise and a mountain of joint pain and disintegrating joints.

My kidneys however are still a mess.  I've now lost 1/2 liter of blood and it shows in my red cell count and hemoglobin.  That's not cool.  It'll be interesting to see what the doctor has to say about that on Monday. 

This weekend is just about survival and steering clear of people.  I have a wedding to do next weekend so I really need to work hard tomorrow.  I've got a bazillion table centers to make and table runners and more.   I also got a call from a client I've worked for before in Colorado.  He builds spec homes and duplexes.  He has two houses that he needs designed by next Monday.  That is about 75 hours of work and I said 'sure'.   Yes, I'm crazy.  I don't have 75 extra hours this week but I am bracing for a rocky few months financially, and this will help, especially since I'm pretty sure I will be spending more time in Utah and unable to do my night jobs. 

Basically, that's our crappy day in a nutshell.


Thursday, April 26, 2018

Meeting of the minds

I received an email from our Hematologist/Oncologist last night.  He is concerned about the PET scan results on both kids.  He is having a meeting with several of his oncology colleagues to discuss Shelbie and Spencer's case on Friday morning.  He did not elaborate.  He said he will call me on Friday afternoon.  That means, I'm cancelling my day on Friday.  There is no way I will be able to focus, knowing our future could take a drastic turn.

It's easy to come to all sorts of conclusions about this...The first thing that came to my mind is that, of course, he is concerned, otherwise he would just say, "Don't worry.  We'll see you for the yearly check up next January."  The fact that he is calling in the troops to help him decipher the situation is unnerving at best.

To say the least, Shelbie is not handling the news well.  It is more upsetting to see her giving up and terrified of dying than just about any other thing I could face.  Spencer doesn't know.  He is on a big photo shoot for the next three days so he is sufficiently distracted.

I have poured over these tests night after night, even comparing them to the PET scan two years ago.  I think the difficulty comes in to play because with her CVID, granulomas, a benign tumor, grows in the lungs, which we are seeing.  Over time, these can become cancerous and can sometimes show up 'HOT' on a PET scan.  This was the concern two years ago which is why they decided to do the biopsy.   They know from this recent PET scan that those same granulomas are still there and have increased in size and new ones have also shown up.  However, there are new tumors that can not be identified as a granuloma tissue and they are bilateral in her abdomen and much larger than the other tumors or granulomas she has and have an SUV PET score of nearly 10.0.  Anything over 3.0 should be surveyed for cancer.  Shelbie is well above that score.  CVID patients have an increased risk of developing lymphoma by 18 times, than the normal population.  The lymphoma associated with CVID starts in the lungs and the granulomas. So, it’s extremely complex and if they diagnose this wrong, it literally becomes the difference between life and death.

Given her weeks of fevers, night sweats, extreme fatigue and dwindling overall health, I can only think of lymphoma.

Her earlier PET scan in 2016 was reported as 'Inconclusive' with areas of increased metabolic activity but nothing in the ranges we are seeing now.  This PET scan was reported by the Radiologist as PET POSITIVE.   So...I hope that explains what we are facing a little more.  Either Shelbie has Lymphoma, or her CVID granulomas are spreading and growing at a rapid rate throughout her body and too many to count in her lungs.  There is no treatment for the tumors that are invading her organs and the increase in size and number is startling over just two years.  Lymphoma has a treatment plan, a chance to stop the growths.

Either scenario is scary and both will change the way we view life significantly.

As for Spencer, I don't even know what to expect.  I haven't been as concerned with his thyroid tumors but with our luck, since he's been on the back burner in my mind, his will come back as cancer and Shelbie's will be granulomas...basically there is no way to win this.  I'm bracing for the worst actually but only time will tell...Friday afternoon to be exact.

So, that's all I know for now...on those two.

Something is very wrong with Sam. His eyes are a light tint of yellow and there is a distinct bulging you can see just by looking at him without a shirt on.  He’s also complaining of more pain in that area. I am at a loss.  He too is very tired all the time and sleeps when he can. He just got a third part time job so he’s fairly busy and I’m afraid it’s only compounding his health issues.

Ugh...that’s all I can say.

Wednesday, April 25, 2018

It's A Wrap

One minute, you have a beautiful, 2016 Nissan Altima and in a split second event, you don't.   The car has been deemed a complete loss so that's the end of that. 

Now that I have had time to process it, I guess it really was the best outcome for us.  This car was a lease and that was working out fine when Shelbie drove it because she used it just around town, so she was able to keep the miles low and in check.  When Spencer started driving it, he racked up the miles driving from Provo to Salt Lake for weekly hospital visits and then all around the Salt Lake Valley for work, so by the time we returned the car a year from now, we would have been well over the allotted miles.  Someone had scraped up her bumper in a parking lot and we were waiting to fix that until just before we returned the car to the lease company, as well as replace the windshield...so, in the end, this saved us in some huge fees and penalties, even after I pay the deductible.

Spencer's injuries will mend and the lady he hit has been reasonable and kind and so the claim will be closed by tomorrow.  I can't say enough about how amazing Progressive has been to work with.  I have never been so impressed with a company's customer service as I have Progressive. 

Anyways, it could have been much worse.  The timing hasn't been great.  Sometimes, it's the small annoyances that break you. 

I am still waiting to hear from our doctor.  I have called every day and sent emails.  I know he is a busy man.  He was just recognized for his major advances and research in Leukemia and Lymphoma so between his research, clinical patients and overseeing the bone marrow transplant unit at Huntsman's, he's busy.  He's busy because he is so good.  So, I will continue to wait as patiently as I can.  Just another exercise in Faith.   

Until then, it's business as usual.

Monday, April 23, 2018

Just Because

Have you ever wondered what it would be like if car insurance companies behaved the same way health insurance companies do?  Think about it, we get better treatment for our cars than our bodies.  How is this even possible?

Unfortunately, just because we've been living on easy street the past, oh, I don't how long, months at least, it was time for a little hiccup a little trial of sorts.  We've been spoiled, just coasting and such.  Things have been going so well, it's to be expected that we had to have something go wrong.  Everyone has something right?  Why should we be exempt?  We are such slackers. I've just been waiting for the shoe to drop.

Spencer was in a significant accident tonight...in Shelbie's car.  Air bags deployed, hyper extending his fingers on both hands, possibly breaking one thumb at least,  whip lash, and impact to his pace maker again!! The last thing the cardiologist said after the snowmobile accident...no more accidents!

He called me at 5 tonight pretty shaken up and a little in shock.

I was very calm, which is a curious thing.  I find that I no longer react to many things anymore at least not at first and sometimes not even for weeks or months.  I called my insurance company.  Insurance companies are partly responsible for my PTSD and bad moods.  I hate them.  Health insurance companies are horrible, awful entities and I have a serious anxiety problem whenever I have to deal with them.  I don't swear, I just yell out "BRIDGESPAN!!!"  Or instead of saying, "Oh Crap"...I just say "MOUNTAIN HEALTH CO-OP" or if I'm fuming mad I shorten it and say, "MHCOP".  It's does the job of the F-word or any other horrid, awful expletive.

I found tonight that car insurance companies are not like that, at least Progressive's claim line wasn't.  The lady was so kind.

The first thing she said was, "Are you okay?  I don't want you to worry, we are here for you.  You've got excellent coverage.  Do we need to transport your son via Ambulance?  Do the other drivers need transportation?  Will we need to send out a tow truck?  We can get him a rental...  I'm so sorry this happened, what an unfortunate event.  Thank you for being such a loyal customer with Progressive and trusting us with your needs."

Honestly...I've only been with them for three months, so not exactly loyal.  I swear, I was so anxious and ready for a fight I was already off and running with what I thought was coming next...  If Progressive was Bridgespan or Mountain Health Co-Op...this is how the conversation would have gone...

      'Well, we're going to have to call in our adjusters, the team of high school drop outs we've hired to assess if you really do need your car fixed or not.  OH, what's that you say?  The front wheel is bent at 45 degrees?  What? The air bags are hanging out?  Well, that doesn't necessarily mean you need it fixed.  Our team of high school drop outs believes you can still drive just fine.  Do you remember how to use hand signals? Wait what?  Your wheels fell off in Utah?  Unfortunately we don't cover cars that drive outside of a 10 mile radius from your home.  Shoot.  That's clear out of network.  I'm afraid we won't be able to cover anything for you, I mean if we were going to in the first place but definitely  not now.  Not now that you are out of the 10 mile radius.  I'll check with our team of drop outs who know nothing about cars and make sure they haven't changed their mind...Can you spell the name of the car you were driving anyways, I'm not sure how to spell that....I've never heard of a Nissan, I think we don't cover that line of car...If you were driving a Datsun, then for sure we would cover that.  Your next car needs to be a Datsun, we can cover those but not Altimas.  Yes, that is in the fine print on page 732, about 1/5 of the way down...Well, I'm sorry if you didn't inform yourself of the policy when you purchased it.  Is there anything else we can do to be of service?"

Thank goodness Progressive didn't act like Bridgespan or Mountain Health Co-Op because I would not be blogging tonight but rather, making one phone call from a prison cell because I'm about to snap!  I probably won't snap though...I don't really have time, I've got a take a shower and get ready for tomorrow's catastrophic event.  I'm just praying that somewhere between now and tomorrow when the insurance adjuster calls, Progressive hasn't been hijacked by a Lobbyist in the Healthcare Industry.  I like Flo so far.  I think maybe Flo needs to give some pointers to the Health Insurance sector about how to behave.

Anyways...I was ready to make a drive to Provo to help Spencer.  He really has no meaningful support.  I did call someone I know to see if they could go pick him up from the accident scene and drive him back to his apartment, but that didn't work out the way I had imagined.  So, Spencer walked home.  He needs to see a doctor about his injuries, hopefully tomorrow the rental car can be delivered and he can drive himself there.  If not, he said he would ride his bike or skateboard.  UGH...Those are fighting words to me..."Spencer!!  I will drive down there and take you to the doctor, you aren't riding your skateboard with a jacked up back, neck and two hands and who knows what condition your heart is in!!"  Honestly.

Tomorrow's another day...Still haven't decided if I'm going to go down yet. Poor kid!!! This seriously getting out of control.

Saturday, April 21, 2018

I'm fine.


In my parked car this afternoon, I sat alone and listened for the birds who finally found their way home via Spring.  Shelbie is off in the woods somewhere, capturing memories for a young,  growing family so it seemed a perfect moment to be still. 
If you know me, you’ll know I don’t sit and I’m never still.   I don’t have time to let a quiet moment break into the vaulted thoughts of worry and fear that I have so systematically shelved, in my very worn out head.  In so many ways, I’ve been deeply detached from the impact of my unique circumstances of testing. 

I always imagined a simple life for myself.  A quiet life.  A husband, a few kids, a family tethered securely to a well worn porch swing where everything was right with my little unnoticed, simple life.
Sitting here, as the birds chatter back and forth, I am cursed to be alone, with nothing to do.  I am profoundly aware that I am tired of living life on the edge of ‘We will be fine’, because I just don’t know how much longer I can be fine, or make my kids believe that they will be fine and that even though we’re together, it’s fine.  The truth can be stark, and grieving can bite and fester, especially when it has yet to produce a corpse.  Questions balance ever so gingerly on the very edge of ‘Fine’ and threaten to clear the smoke and break the mirrors strategically placed; a hologram of that quiet porch swing that exists in a made-up, wishful, world from long ago.

What if?
Could Be…
Maybe…
Then what?  

And they all trail off into the shameful world of fear, guilt, dread and disappointment, unanswered and insecure and that quiet little world is bigger than you and wider than me and nothing can touch it, and sense can not be found and this isn’t the world where I want to dwell and the very question…”How are things going?” becomes the worst collection of words I could ever hear.  I would rather carve my fingernails into an eternal chalkboard of grit than face what we face…

Every. Single. Day.

But, here we are and here I sit and everything teeters on an axis of tests that could mean any number of things and the world of never enough beats upon my door and the bridge between here and the end of suffering is burning bright.
The PET scans did not come back with any hope or promise.  Shelbie’s bottom line is that is was “PET Positive” Many new tumors have grown with SUV scores well above normal and into the range considered cancer and when I read that, I couldn’t help but consider the night sweats, the fevers for weeks now, the fatigue, the pain the lymph nodes that wax and wane.  I could go into detail, but why?  Our doctor is out of the office for a few days so the official word has yet to be delivered.  So we sit and stew…but it’s fine
.
Spencer was discovered to have unidentified growths on his parathyroid and thyroid.  His liver and thoracic aorta were “hot” as they say in PET scan terms.   Without further investigation, who can say what we are dealing with?  It’s an eternal game of hide and seek.  So, we’ll wait…but it’s fine.

Two more unplanned trips to the hospital for Samuel this week.  The buffet of trouble included C- Difficile, a ruthless, and antibiotic resistant intestinal bacteria that runs rampant without swift and aggressive treatment, and/or, a bowel obstruction called an Intussusception.  The symptoms are similar and he’s already had to deal with each of these options before.  Neither is good. The winner was C-Difficile.   One would think that with a diagnosis such as that, treatment could begin without a hitch.  But no.  

My insurance has denied the medication.  Even if they did accept it, there are no pharmacies in the area with any supply of the drug he needs for this strain.   A ten-day supply or 20 pills is just under $1000.00.  My pharmacy took pity on me with a cash discount which is sweet, but laughable, bringing my bill to $700.  But what difference does that make? The doctor needs him to take 4 pills a day for 10 days…our bill will be double if insurance doesn’t bend.  There are no pills to be bought this week…Next Wednesday, they will arrive. 

So, my neutropenic son, the one not mounting an immune response of any kind to these bacteria, whose kidneys just got hammered by a virus, will be medication free until at least Wednesday.  So, we wait and I fight with the almighty insurance company, who surely knows more than our doctor…but it’s fine. 

I left the pharmacy with the last straw hanging off my shoulders, beaten and so very, very tired but we needed milk and bread and milk and bread seemed like such very important things in that moment of disgrace and dread.   The store was filled with students back from Spring Break, but in the crowd was Sam’s best friend’s mom.  One of the sweetest human beings you could meet.  She always asks about Sam whenever our paths cross.  Her son is serving a mission and he has a heart of gold like his parents.  I tried to interrupt my tears so she wouldn’t suspect my upset and I did but my frustrations spilled out in a sugary way…”But it’s okay.  It will all work out.  It always does.” I said.  I thought that ended our interaction. 

After more errands and a heavy heart, I stumbled my way back home to find on my door step from this sweet sister a loving card and $1000.00.  “We had some extra money"…she said, “We want to help you pay for Samuel’s medication.”

There are no words.  There is no way I can find any adequate method of gratitude to this family and I’m not even sure how to begin.   I feel humbled and blessed beyond measure and hopefully, I won’t need the full amount…Hopefully, God can pull a miracle and the insurance company with do the right thing, and I can return this generous investment made with pure love. 

I am tired and I am sad and I am worried…but I’m fine. 

Wednesday, April 18, 2018

Meh!

Today was another big day.  
I had an early morning appointment to get some ultrasounds of my joints and I also received a big ole steroid shot in my hips.  It wasn't good news.  There's just no way to sugar coat this.  Every. Single. Joint in both of my hands is deteriorating.  I have severe synovial hypertophy.  It's in my hands and my left wrist and my right shoulder.  I don't know exactly what is causing it or how they will treat it until the end of June...My doctor is leaving the country for 6 weeks!  

She did say that I need to stop overusing my hands or I will be facing complete disability in a very short amount of time.  

UGH>...Everything I do involves my hands...from playing the organ every week at the temple or church, to my jobs, cake decorating, flower arranging...everything.  I'm a little worried and upset with the news but of course, as is customary, trying to keep it under wraps so I don't upset the kids.

She said it's so severe that I have already almost lost the use of my thumbs.  There is no cartilage left and that explains why my thumbs often get 'stuck' and I'm unable to use them.  It's very painful but I just try not to complain.  Last weekend playing the organ, I had to quit after just 45 minutes, my hands were throbbing and so swollen.  I felt bad leaving but it's becoming a major deal. 

So, I'm not sure what will happen.  I'm guessing they will take an aggressive route in June with some immune suppressant infusions and then move to weekly injections.  I think this is what will happen because they've already suggested that I'm headed in that direction. I'm just full of dread.  As for the injections I got today, I sure hope today isn't a sign of how well it's going to work because I'm dying!   I have decided not to take pain meds because those are killing my kidneys so...it's all about suffering for me. 

Shelbie got her stitches out today!  It doesn't look nearly as bad as what I was imagining.  It looks pretty bad though...the incision is smaller than I thought it would be.  He had described it as running down her finger and across the top.  I guess because he had to screw it together instead of fixing the ligaments and such, he could make a smaller incision. 

 It's pretty red and ugly but that will look better over time obviously.  She has 6 more weeks in a splint and then we will recheck to see how things are going.
 It's nice and straight! 
 I love this surgeon.  He is the best.  I love everything about his personality, the staff and the nurses.  It is rare to come across a clinic that feels this happy and perfect in every way! 

Tonight was the big Pine Wood Derby Race!  It was pretty fun but only because nothing compares to seeing a smile on this little boy's face- Oh, the 8 year old was pretty stoked too!  Just kidding.  I'm talking about the little kid in the orange shirt.  He is such a darling boy, so sweet.  He has a single mom who has her hands full.  I knew there would be no way she could help him get his car built so I talked to Sam and he was more than happy to help him out.   Sam is so good with kids.  He is full of patience and fun. 

I did very little and just let Sam run the show with the only rule that M had to do the work himself.  We let him choose the design, colors, and then paint it and set the wheels.  The only thing Sam did was use the band saw to cut it out.   We didn't do any research, no sneaky engineering, the whole point was to just show up with a finished car. 
'Big Brother' Sam at the Check In.

Sam and M weighing and adding a little graphite to the wheels
 Lo and Behold...He came in second place!! I was dying!  There were boys there who had nice looking cars and whose dad's did some serious engineering.  I don't think anyone even expected M to show up, let alone take second place.  People kept asking, "What did you do?" We literally did nothing special!  In fact we did everything wrong.  I had forgotten we needed to spray a finish coat so the stickers he put on would stay on, so we just sprayed that on after the wheels were already set in place.  Ha ha...so there was overspray and everything on the wheels!  I didn't realize it had to be 5 ounces so this morning, I was chiseling out the bottom of the car to sink some weights in.  I used a kitchen knife and a hammer...cause that's all I had. I made the hole too big so I just filled that up with hot glue.  Tons of hot glue!! It's laughable.  Then, to keep the weights from falling out, I glued a piece of old cardboard over the top.  When Sam came home from his first job, he looked at it and said, "What did you do to his car?"  He was dying in laughter! 

It was so funny. I felt stupid, embarrassed but so happy that little 'M' could enjoy one little success in his life.  He has been through some incredibly hard things but his spirit is strong and he is full of love. I was proud to see him succeed and proud of Sam for taking the time to be a friend to him.  It was the best part of a the week to see my friend, who has been thrashed around by a very hard life, get a break from her trials and laugh and enjoy her boys.

It was a good way to end a very disappointing day. 

The waiting game

This has been an epic week...no trips to Salt Lake.

 It feels weird actually.  I'm itching for a long road trip when I can leave late at night, after having only a few short hours of sleep and chew caffeinated  gum like there's no tomorrow. 

Just kidding...I'm sick of my car.

No PET scan results in yet.  I imagine by next week. 

This week is not without a barrage of medical stuff to do.  Monday, I spent over two hours at the hospital getting all the blood work, scans and x-rays I needed that I was shamed out of getting last week at the Rheumatologist's office.  This morning, I get to have an injection in my back that, fingers crossed, will improve the quality of my life some.  I can't even imagine what it would feel like to be pain free, even if for one day.  Because my kidneys are screwed up, I've been avoiding Ibuprofen or Tylenol so life has been extra miserable in the pain department.

Also today, Shelbie gets her splint off and we get to see how horrible her finger looks.  She continues to run a low grade fever- it's been two weeks!  She has a cluster of lymph nodes that are growing under both arms so I am starting to feel a little anxious. 

In Sam news...the Nephrologist has determined that a virus has attacked his Uro-genital track, from his Epididymis all the way to his kidneys.  His kidney function is looking better, though he still has some blood and mucus in his urine.  His white count is also starting to come back down to his usual low number of 1.7.   The bigger concern is his blood pressure.  In theory, with his kidneys healing, his blood pressure should be dropping as well but it's not.  He bounces between 179/107 and 139/89...if memory serves me right.  I am suppose to take his blood pressure on both arms, three times a day and send it in to our doctor.  After two weeks, he will determine the best course of treatment. 

He has a hunch that perhaps this is a cardiovascular problem more than a kidney problem.  Did you know the blood pressure and kidney function have a direct correlation?  I have studied about this with my own kidney stuff but he confirmed it!  There was some fluid collecting around his kidneys that showed up on the ultrasound and he does have some enlarged ureters.  Sam has blood shunting on the outside of his heart due to Arterior Venous Malformations or AVM's for short.  It's a result of his disease. This shunting is creating his heart to enlarge.  The concern is that perhaps it has advanced and that is the reason for the increased blood pressure.  He could also have a problem somewhere else in his vascular system.

At any rate, the next stop for Sam is the Cardiologist in two weeks as well as Immunology.  The fact that a virus hit a major organ without any sign of fever or immune response to speak of, tells me it is probably time to start plasma transfusions like Shelbie does.  He gets way too many viruses and strange bacterias. 

In some happy news...Sam has been a 'big brother' to a little boy in our neighborhood who doesn't have a dad around.  They have been working on his Pine Wood Derby car for the big race tonight!  It's been so fun to see Sam helping this little kid out.  When they first started working on it last week, I said to Sam, "Don't dad manage this project.  Let him do all the work, just make sure he doesn't cut off a finger." 

You know...dad's can get carried away with projects like Pine Wood Derby cars and the night of the race, you call which car is a dad's and which car is the one built by a kid.  This isn't a Dad car.  It's been a treat to see the light in this little boy's eyes as he sees his awesome car!  I'll post pics tomorrow.

Thursday, April 12, 2018

Miracles and Mayhem

Today was a day of lessons learned. 

An adventure with God.

A culmination of every effort of faith I have ever gathered.

We left our hotel in a rush early this morning, got stuck in massive traffic and not just morning traffic in Salt Lake but there was some crazy person driving the wrong way down the freeway so things were moving extra slow in an effort to keep everyone safe.  It was pouring rain, as if we were in the middle of a car wash.  It took a solid hour to get from our hotel to the hospital which normally would have been a 20 minute drive. 

There was no sitting around once we arrived and they whisked Spencer off for his two hour PET scan.  Shelbie, Sam and I went back to the car with our plan to show up in the ER at the University Hospital so that they would call a Nephrologist on call and Sam could get the help his kidneys need. 

When we got to the car, I suggested we stop for a minute to pray.  I prayed that I would know the steps I needed to take in order to get Sam the care that seemed important for him to receive.  I prayed that if in fact Sam was in kidney failure like our local doctors thought, that things would fall into place and we would be led to the next best thing for Sam.

As we pulled into the parking garage, I had a feeling that I needed to go to the Kidney Clinic first and try to talk to the scheduling coordinator that I have been talking to every day since last Thursday.   Surely a face to face meeting would be easier than all the messages and phone calls.  I had taken all of Sam's test results from the past two weeks to show her how serious it was.

We did that and the secretaries were happy to get the scheduler for me.  I reminded her about the situation and she literally had no clue who I was or what the story was.  Nothing rang a bell to her.  I have spoken to her every single day and some days more than once.    She was not a friendly person.  She was abrupt and sarcastic.  I showed her the test results and she said, "This? This is what you are in a panic over and think he needs to be seen right away?"

I immediately felt shamed and crazy.   Maybe the doctors back home were all wrong about the seriousness of this.  "Well, all I know is what I've been told.  I just thought maybe if you could show a PA here, or a Fellow, maybe a doctor if they have time and if they don't think it's a big deal, I'll stop bugging you."

"Everyone bugs me!"  She said in return.  "I haven't even received a referral or records and I've checked all the faxes this morning already.  Our doctors are booked out months."

I felt sick in every way and all I wanted to do was cry...in a ball...in the corner.  We left and took the elevator back to the hospital lobby.  We were going to go back up to Huntsman Cancer Institute where Spencer was but instead, I said, "Guys.  I need to sit down."

We found a row of seats and sat there.  "We are not moving from here, until one of us has an inspiring thought of what to do next for Sam so start praying people." 

We sat.  And sat some more.  I tried calling to our family doc again because they promised me they sent the records and referral two days ago yet it still wasn't where it should have been.  I kept getting disconnected.  A dozen times...the call wouldn't go through.  Once it did and I left a discouraged, pleading message for the nurse to just give me a break and get the records sent like she had promised she would do.  I wasn't mean and ugly, just so exhausted.

Shelbie said, "Why don't you take him to the urgent care instead of the ER.  Maybe everything is better and he really won't need to see the Nephrologist."

That made so much sense to me and Sam agreed.  The urgent care is part of the ER actually and I thought, at least, they could retest his urine and CBC and if it still looks bad, they can write me a referral that I could take down to the Kidney clinic and they would have a record that there is in fact a problem.    We headed down there and they took us right back.  Not one ounce of waiting around.   I explained the situation and in less than 5 minutes, Sam was giving a urine sample and we were waiting on results.  Just 2 minutes later, my phone rang and it was a hospital number so I answered it.

It was the scheduler from the Kidney Clinic and she was a completely different person.  So friendly and I couldn't believe what came next.  "I'm just calling to let you know we had a cancellation for a 1:00 appointment this afternoon and we would like to see your son in clinic if that works for you."

Unbelievable!  She had sent orders for blood draws and a urine test which we had just done, with exception of the blood work.  When the urgent care doc came in, she said they wouldn't have the results for a couple of hours so we could just leave and they would call with results.   We hurried out of there and I sent Shelbie and Sam to the lab for blood draws and I ran back to Kidney Clinic to fill out the new patient packet, then raced back to the lab to grab the kids then ran up the hill to Huntsman and arrived just as Spencer walked out of the Radiology Department. 

We had just an hour or so before Shelbie's PET scan and Sam's appointment 30 minutes after Shelbie's got started.  We said goodbye to her and wished her luck, ran as fast as we could, back down to the University Hospital just in time for Sam's appointment with the Nephrologist.

I was expecting a long wait and ending up with the worst kidney doctor just because that's usually how things like this happen.  NOPE.  We had no waiting time and we got one of the top Nephrologists at the University!  He is from Jordan, in the Middle East.  He was at the hospital for a meeting and decided to stay in order to see Sam!  He was absolutely the most amazing doctor!  It took some time to get use to his heavy accent and he spoke sooooo fast!!  Faster than I've ever heard anyone speak before.  Of course, our local doc did send the records but they sent mine, not Sam's so nothing was making sense and I was so confused until he realized we weren't looking at Sam's chart.

He had never heard of Dyskeratosis Congenita before but he said, "Okay, please teach me something about this disease.  I want to learn."  It was an amazing hour of listening and learning and mutual respect.   He pulled up research articles on how the disease can affect the kidneys and we read them together and he taught me so much!  At one point, he even ran out to his car to get a portable ultrasound machine so he could look at Sam's kidneys himself. 

He kept saying, "I know you are a smart mom and a good mom and I know you are scared.  Don't be scared.  I will take care of your family.  I am your friend okay?  Please don't be scared.  We will fix this.  I know the best surgeons, transplant doctors, whatever we need I will provide you the best care. You call me anytime you want.  I want to get an email from you every day telling me how Sam is doing.  Okay?"

I could go on and on about this miracle.  It was truly an act of God to watch this unfold into the most amazing blessing.

So, Sam does have a problem with his kidneys though the details have yet to be determined.  He said that doctors are quick to use the term 'kidney failure' when they see numbers such as 1.5 but he likes to reserve that phrase only for people already on dialysis.  Incidentally, Sam's number is 2.7 so that is getting up there and serious.   The ultrasound he did in the clinic showed some abnormalities in his ureters as well as fluid of some sort collecting around his kidneys.  He ordered a formal ultrasound which we were able to do today.  I am concerned that he is getting more venous malformations like he has around his heart and lungs.  They spread and once they hit the kidney and liver, you are in trouble.  It causes blood to shunt in those organs and creates all sorts of problems.  He couldn't tell if the fluid was blood or something else.

Of greater concern than his kidneys themselves was his blood pressure.  It is climbing scary high.  He said there is a direct link between blood pressure and kidney health...I knew it! This is another piece of the puzzle that leans towards the venous malformation theory.  I am suppose to take his blood pressure three times a day on both arms and email him the results.  He asked how Sam's eyes were and I told him they were fine but then I remembered that he keeps losing his vision.  We are so use to it now that I forget it's a problem.  You could see light bulbs go off in his head.  He said he often sees eye problems as a direct correlation to kidney disease.  Again, it's a pressure and vascular issue. 

Something has clearly attacked Sam's kidneys.  They are swollen and struggling.  We will need to wait a few days until all the labs are back and the ultrasound results before we determine the next step. 

I feel so relieved with how things went today.  Of course it's horrible news but the fact we have one of the top doctors is amazing.  He even called Sam on his cell phone after the ultrasound to make sure he did okay through that and asked us to go back down to the clinic so he could check one more thing.  I love this man! 

Shelbie did okay for her PET scan although both kids are sick tonight with all the contrast and radioactive drinks they had to ingest.   Sam is handling things okay as well.  Sadly, he is suppose to leave for Disneyland on Saturday with all his cousins for Spring Break.   He will not be able to go with them, neither will Shelbie or Spencer for that matter.  It's sad to see them miss out on this but he's being a good sport which is another blessing. 

It was such a crazy day and I am exhausted beyond exhaustion, mentally and physically and spiritually for that matter.  I experienced Faith the way I think God has always intended for it to be.  When we can do nothing more for ourselves, and when there are no earthly answers, all we can do is turn it over to the Lord and watch what he can do.  Faith is work, such hard and constant work but so incredibly overwhelming when you see it unfold so effortlessly the way I saw it today. 

Wednesday, April 11, 2018

Stuff you can't make up

I know most of my life seems made up because really...it has become a bit ridiculous but today was the tops in crazy.

I've been waffling about canceling my appointment today to see my Rheumatologist.  I've felt like it's a waste of time and resources, especially since office protocol means I don't even get to see the doctor until the end of JUNE!!  Yep.  I saw a PA today and he just does an assessment, listens to me whine and complain but he isn't allowed to do anything other than just that, even though I'm quite certain he could do more intellectually.   The second appointment is with a different PA and they do more examines and then a few weeks later, you see the doctor. 

This is probably a wonderful way of doing things if all you deal with is arthritis or whatever.  I don't have time for this kind of circus side show, but, I didn't cancel.  In fact, they called and asked if I could come in 2 hours earlier and I said, "If I come in and change my entire afternoon around, will the doctor be on time or are you just cramming me in?"  She assured me he would be on time so I showed up two hours early. 

NOPE...of course, he was over an hour late.  You know how I feel about this.  Even though I was so angry at the ticking clock, wasted time at work, clients calling left and right...I remained calm.  Everything was so slow!  He left the room so I could change into the gown and it was another 20 minutes before he came back in.

I guess I'm glad I showed up.  My Ankylosing Spondylitis has progressed since I was there last, 5 years ago.  I didn't realize just how much pain and limited mobility I live with until he started poking around my joints.  The most disturbing is that I have lost nearly an inch of rib expansion which means the disease has progressed from just my hips, up into my rib cage.  The connective tissue in my ribs is beginning to calcify which means they will cease to expand enough for me to fill my lungs with air. 

He finished up and said the nurse would be in to draw all sorts of blood for testing.  That all seemed find until the finance secretary came in before the nurse.  She explained that before they could draw the blood, they would need my co-pay, as well as whatever portion insurance wasn't going to pay.  It was over $300.  I was a little confused and told her I didn't have that much money to pay them today.  She proceeded to tell me that I would not be able to continue with testing unless they had payment in full. 

Are you kidding me?  I offered to pay the co-pay but they refused to do the testing.  And next week, when I go back to see the second PA, I will need another $150 cash!  What on earth??! 

"So, what do I do now?" I asked.
"Well, we'll give you the orders and you'll have to go find another doctor or hospital to do the blood tests."
"Why can't you just do it and bill me?"
"We are a specialist."
"So?  What happened to billing the insurance company and then billing me?"

Then I asked when I get something to manage my pain...JUNE.   Not til after I see the actual doctor. 
The nurse said, "Well, maybe next week they can give you a shot of steroids and that will help but you'll need to bring money to pay for that."
"So, what do I do from a week after that shot wears off until JUNE?"
"Well, I'm not sure."  the nurse said, "maybe it will last until June."

I left there, not only in pain but completely embarrassed that the entire waiting room and 4 secretaries sitting at the desk, now know that I couldn't afford to even get blood work.  Ridiculous.  I don't even want to go back.  The world of medicine is completely out of control in this country.  There is no way I can afford to go to the doctor if this is what is expected.  I just wanted to scream. 

Anyways...the madness continues.

Tuesday, April 10, 2018

Ball of Stress

Stress kills...I'm convinced of that more than ever.  That means, at the rate things are going, I have about 3 weeks left of life. 

It's been a stressful few days. 

I have been trying so hard, harder than I have ever tried before to just leave things in God's hands.  That's hard work.  I'm telling you.  Hard. Work.

It's always a struggle to balance the act of a gracious surrender with the overwhelming feelings of anxiety and worry.  I don't do this well, but I try. 

I have often joked that if jumping to conclusions was an Olympic Sport, I will have earned me a few gold medals.   This whole kidney failure, bone marrow biopsy, small bowel cancer theory, broken bones and the whole 9 yards is wearing on me.   I've tried to do what I can to get Sam an appointment with a Nephrologist in Utah but I have been running into incompetent people, forgetful people and people who won't break protocol.  It's so frustrating.

I finally called our family doc again today and they had no record of everything I spent Friday doing- in their office!!  In person!!  Of course, the guy I left instructions with wasn't on shift Saturday through today and no one got the records from the hospital or sent a referral.  Utah won't do a thing until they have all that.  I was very patient as I explained again, what was happening. The hospital social worker assigned to us by the ER doc completely dropped the ball.  I've never heard from her. The nurse at our Doc's office said she would call for the records and I made her promise to call me back within the hour. 

She did even better.  She called me back in about 15 minutes and said our doctor got onto the hospital server and looked at the labs.  He is 'extremely' worried with the results of his blood work.  I told him that Nephrologists were booked out 5 weeks at least and asked if he thought maybe we could wait til then...ya know, if Sam was his kid...what would he do?

"Get him to the ER in Utah.  He doesn't have 5 weeks to wait."

I was doing really well until he said that.  I always wonder if maybe doctors make mountains out of molehills and I keep jumping through their hoops, but I could tell he too felt we are in a serious situation. 

I am lost.  I have never struggled so much to know the right thing to do.  It's as if Heaven is out to lunch and no one is minding the desk!   It's frustrating.  I get even more frustrated that I am so frustrated.   I guess, my plan is to call the U first thing in the morning in hopes that they received everything they need and pray like crazy they will say...'bring him in today'.  If they don't say that, then I am taking Sam down with me for the PET scans and I will take him to the ER. 

I feel sick and sad and really quite worried.  It all happened so fast, in the midst of so many other big and disturbing things.

In Shelbie news, she's been running a fever since Sunday.  Nothing too far over 100 but it's been constant and steady and doesn't change with Tylenol or Ibuprofen.  The surgeon and his team have been great!  They took all the appropriate precautions for immune-compromised people having surgery and it's not likely she has a finger infection.  We are watching for streaking etc...nothing so far so she just gets to be miserable and bounces between hot flashes, night sweats and chills and shaking.  With the PET scan to monitor for Lymphoma coming up on Thursday, these symptoms are unnerving. 

Spencer is doing okay post biopsy.  He actually found a free lance gig yesterday at the University of Utah filming a commercial.  He was moving equipment back and forth from his car to the top floor of a large building and got stuck in the elevator.  Apparently, there was a power surge on campus and it took out several elevators.  He was stuck for over an hour.  He had only reserved the venue for two hours.  The call button in the elevator was broken so there was no way to alert the campus security so he had to call 911.  What an ordeal...just another thing to go wrong for the kid who tries so hard to do everything right. 

I will try to write more this week as things will be happening fast...another week of all three kids in the hospital!  I just can't believe it!!

Sunday, April 8, 2018

Surgery and Kidney Updates

Shelbie had her surgery on Friday.  Everything went well.

Unfortunately, the surgeon was unable to save the joints in her finger and he ended up having to fuse it.  She went too long without the bone in the right place and he didn't have enough healthy tissue to make a pin work.  So, from top to bottom of the second joint, is a screw. 

He said it was tricky because her fingers are so tiny and he used the smallest screw they had and it just barely worked.  She was a little traumatized because she woke up during the procedure to the sound of the drill.  When they took me back to the recovery room she was sobbing and pretty upset that she had woken up and that she won't be able to bend her finger anymore.  It seems like such an inconsequential body part but the pinky really does account for most of your grip.

She has been handling the pain very well!! I've been so surprised in fact.  She is having to take some pain meds but for the most part, it's totally manageable.  Today, she's been running a fever though so I'm worried she has an infection starting in or her body is throwing fits having a piece of metal in the bone.  I am planning to take her in tomorrow and make sure things are okay in terms of infection control.

In Sam news...this is not an easy thing we find ourselves in.  I called the University Hospital to secure an appointment with a Nephrologist but they are booked out 5 weeks!  I explained the situation and relayed the results to the nurse and while she was apologetic, there wasn't much she could do until she gets his records, ultrasounds and CT scans.   I spent most of Friday afternoon while sitting in one hospital waiting room, trying to get another hospital to co operate in getting records sent.  I've been told they were sent on Saturday.

Tomorrow, it will be another busy day of trying to get him an appointment.  The nurse did say that if they can't get him in soon, that we should just take him to the ER and work him in through the on call Nephrologist.   I don't love that idea but we will see what happens in the next day or so.  We've got PET scans this week so the option is there for an ER visit in Utah on Wednesday or Thursday.

This is a pretty boring post.  It's just been such an overwhelming and exhausting week and I am so far behind on work, there hasn't been a second to even pause and process it all.  Like a big bulldozer, we just push on through and we will deal with the wreckage at a later date.


Thursday, April 5, 2018

All Things Difficult

I've been MIA around here.  My life just got exponentially more difficult and worrisome. 

Sunday, Sam seemed really tired but okay.   In the late afternoon, he came to me and said he was having some extreme pain.  We had a house full of cousins and friends so I gave him some Advil and figured things would get better.  They didn't and he ended up in the ER Sunday/Monday.  IT was a bit of a joke in the ER.  We got our favored doc actually but he was not on his game...too many Easter Eggs I guess.  He didn't do an exam, didn't order blood work, did nothing but shrug us off.  So, it was a wasted visit.

After just a couple of hours of sleep,  I was able to get him to a Urologist in the city.  We rushed to get there in time only to find out he wasn't in our Network.  In fact, there are no Urologists in our Network within 2 hours of here but I knew I had no choice so that will be coming 100% out of pocket.   They diagnosed him with Epididymitis, and an infection.  They put him on antibiotics and strict rest and I thought that is where the story would end.

I got several distress calls from Sam while I was in Salt Lake yesterday and tried to help him over the phone.  I had my neighbor walk down to assess the situation as well.  As soon as I got home around 10 pm, I took him back to the ER thinking he had kidney stones.  No stones. 

They did however find that his kidney function is significantly compromised.  The doc was amazing and asked so many questions, considered so many different things, ordered appropriate tests and really spent a lot of time answering questions, teaching me and exploring other possibilities.  He really wanted to admit Sam because of how sick his kidney function is but there is no one in this town who is knowledgeable enough to care for him in our small hospital.  He is very concerned and called the social worker last night so that today, she can help me find a Nephrologist at the University Hospital and get an appointment in the next couple of days.

Sam's normal blood pressure is 98/48.  Last night he was 166/104- another sign his kidneys are in trouble

Poor Sam...having enough of life and it's finals week at school!  Here's to another botched semester! Thank you Dyskeratosis Congenita! 

I am so exhausted, I'm at a loss as to where to start in finding him a doctor.  I'm completely disoriented today.

Anyways...in Spencer news...

He survived the bone marrow biopsy that included no sedation.

I specifically requested the bare minimum which was Ativan to keep him relaxed and Fentanyl to help manage the pain.  Those requests didn't get processed so they had planned for nothing!  I was a little bugged but allowed Spencer to make his own choices and ask for what he needed.  They were able to supply him with a Fentanyl Lollipop.

It was an interesting thing...It was recently invented for the United States Marines in Afghanistan.  When a marine has severe injuries, they are given a 'lollipop' until they can get him to medical care.

It was a very difficult procedure.  He ended up having to have his hip bone punctured 4 times!  The first one for the aspirate, she couldn't get any marrow to come out so that had to be done twice.  Even the second time, there was very little marrow she could retrieve- enough I guess but she was working for it.  The same thing happened for the actual bone retrieval.  So, it was really rough!!!  It was rough to watch and harder still for Spencer.

Our PA who does the bone marrows is really great!  She does an amazing job keeping the kids calm and she talks them through every step.  I have grown to appreciate her ways with them and felt really bad for her as well.   It will be a week or two before we get pathology back on that.  Here are some pictures of the process and a short video I captured of the failed first attempt to get the core of bone out. It's a very long, thick, smooth, hollow needle that gets pressed into the bone and then twisted out.  The video shows the twisting out part.


This is Spencer finding out what a Fentanyl Lollipop looks like.  He said it tasted like salty raspberries.  To activate it, you rub it on the insides of your cheeks and then just suck on it.  It's actually kind of a cool idea, not entirely effective for bone marrow pain though. 

They prepare tons of smears from the liquid marrow which is what you are seeing in the tray on the bottom right side. The tubes are also filled with marrow.

This is the core of bone they removed from his hip.  It was an impressive sample. 

This is the PA removing the marrow.  This is the aspirate part of the test.  She's already created the hole in his bone and through that, sucks out the marrow. 

This week is painfully hard.  I am trying to manage everyone and their stress but it's tough.  I have only been able to work 5 hours this week which is not helpful.  I have clients waiting and wondering what happened to me.  I would tell them but let's be honest...my life is ridiculously impossible to believe right now.  

Five Days. Three kids. Three hospitals. Three Cities.  One Mom and medical bills in 5 days to equal close to $75,000 I'm guessing. 

Today, I'm headed to the hospital with Shelbie for her pre-op work up.  Because she has so many heart and lung issues, the testing will be extensive today in order to have her ready for hand surgery tomorrow morning in the big city!  Ugh. 

The Rise and Fall

Sometimes, I think if I were to write a book about my life, it would be called, The Rise and Fall. There are times and seasons when we hav...