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Showing posts from April, 2016

The Clear Blue

It's been a strange day from out of the clear blue.

Last night, I had this gnawing feeling to dig up the medical binders from 1995.  Shelbie was three years old.  It was the year I started keeping medical reports.  This morning, I spent over two hours pouring over test results.  Time passes and the details of the past are fuzzy at best but reading all those medical notes again, brought back so many memories.  So many things I had forgotten.

It was the same year that Shelbie had a chest x-ray because of continued breathing problems, infections, etc.  That report noted that she already had those nodules and calcification in her lungs.  Why...I'm wondering now, why the doctors never told me about this.  I had the report but that was pre-google, pre-computers- long before I began learning about these complicated issues.  I functioned under the assumption that if it was important, they would tell me.

I also found the very first abnormal blood draw that sent us to Primary Children…

The Nurse

Today was our first, in home transfusion, and...the nurse?

Two nurses came.  We're a handful.  In fact, one nurse was actually the owner of the Hospice company.  She didn't stay the whole time, just until we got all the paperwork done, blood draws complete and training on the pump, but the nurse we will have for a couple more weeks, or more, stayed all afternoon. The transfusion itself ended up taking nearly 5 hours but she was here 6 hours!!!  Much longer than they projected it would take. Both nurses were great.

Our regular nurse is wonderful!  It's so strange to me how the smallest detail seems to be taken care of sometimes, even down to the nurse that will now be spending the afternoons with us once a week.  Without a doubt, she was sent from Heaven.  I asked her if she was nervous going into a new home and she said she was a little.  I said I was a little nervous too having her here.  I even told her about all the little plans we had for her, including the channeling …


Sub Q. arrived today.  That is medical jargon for subcutaneous.  Subcutaneous Immune Globulins and it starts tomorrow.

Am I nervous?  Yes. Yes I am.  Is Shelbie nervous?  Yes.  Yes she is.She's had a few mini panic attacks.

I had a conference call for nearly an hour with the specialty pharmacist on Monday. He told me he felt he had gotten misinformation about Shelbie's past medical history.  I inquired, "Why do you think that?"

"Well, I just can't understand how this medical history can be talking about one single person, who is still alive."
"Ahhh, I'm sure it's correct.  Yes, it's quite a history."  I replied.
"Are you sure it really took them over 10 hours to administer IVIG and still she had aseptic meningitis every time?"
"That's right.  Every time."
"That is insane.  No one should have to suffer like that."

He went on to explain the risks involved with Sub Q plasma and how her weekly transfu…


Today, I've been remembering the good old days, back in the 70's when we took family vacations. I shudder thinking that I even remember the 70's.   That was long time ago and long before seat belts existed in cars, or maybe they did but wearing them was optional.  Apparently, we cared little about our own safety and less for our children's.

Looking back, I have to wonder, with a smile on my face, 'What were my parent's thinking?'  Not only did we forgo seat belts in the back seat of the big silver Buick, but they built up the leg room so it was the same height as the bench, and we bounced around back there on a giant, Buick, backseat bed for hours, until we reached our destination.

Before starting any trip in the car, I dutifully made myself notebooks so that I could note every license number we passed and record general activities we did.  One task that was always assigned to me was counting tunnels.  It seems like such an odd thing but I remember my dad…

Go Figure

There are some days in which I feel I have everything figured out.  I feel close to the spirit, I feel inspired and then mysteriously, it all changes and I feel lost and confused.  I am in the lost and confused stage most of the time.

I will say this, even during the times when things feel harder than usual, I can still feel the faint whispering of goodness and Godliness in our life.

On Wednesday afternoon, when we were through with Oncology, Shelbie got incredibly agitated and upset but instead of verbalizing her thoughts, she just simmered in them for a good little while.  Enough, that when I inadvertently said something that was misinterpreted, everything blew up!  This seems to be the norm for me anymore, people misjudging me, not liking the way I handle my life, suggesting I need to do 'life' differently; who knows what is up with that but it's getting to be a nuisance for me.

We tried to talk things out but she didn't understand me and she gave up the dialogue l…

Follow up part 2

Yesterday, we spent the day at the University of Utah Medical Center for Immunology follow up.  Things felt a little more settled and even somewhat hopeful.  Not so much in the sense that things aren't as bad as they thought, but hopeful that we managed to get through this horrible, acute situation from the biopsy.   The doctor was quite happy with how things are improving.

I learned an important lesson while in clinic.  Shelbie's white count was nearly triple what it normally is, as were her red cells and even platelets were up significantly.  I have seen this happen nearly every month when Shelbie had IVIG.  They would always draw her blood before the transfusion and give me a copy.  I looked at these normal counts and was happy, thinking that IVIG was really doing a great job keep her counts normalized.

When Dr. S walked in the room, he was a little on edge and nervous.  He said he had looked at her counts and was very worried that he was going to have to deal with an ang…

Post Surgery Follow Up

We are back at Huntsman's today for follow up clinics for Shelbie.

Today was Oncology.  We met with Dr. Shami to go over the official pathology reports.  He was great to talk things out.  He has a rough plan, though it was a sad reminder that there isn't much they can do.  They are considering three diseases in addition to the DC diagnosis.

1.  CVID- Common Variable Immune Deficiency
2. Lymphoproliferative Disorder
3. Sarcoidosis

The first two have been tossed around for awhile now.  The second one, not so much but the nodules in her lungs are suspicious for Sarcoidosis and the tissue found in the biopsy also suggests this could be a possibility.  At any rate, there isn't much we can do.  He said they treat symptoms and aim for control of the disease and comfort.  

He is leaning more towards CVID but is going to bring in our Cardiologist and a Sarcoidosis/Pulmonologist specialist to see what we can do about her lung capacity and difficulty she has in breathing and fatigu…

The Great Dissolve

It happens, things come undone every now and again.  It's hard when we can be cruising along and managing fine and then from nowhere, our resolve dissolves.  Such is life.

This was a weekend of dissolve.  Shelbie may have over done it this week and she is feeling weaker because of the lack of plasma.  Emotionally and physically, she has struggled.  Friday night was especially hard, and things weren't much better this morning.

The uncertainty of her situation is extra hard for her right now, for whatever reason.  She wanted to run away.  We all feel like running away every now and again.  So, in an effort to help her, I suggested we run away together.

Just after noon, we left.  We stopped for a great and greasy lunch at Frostop then on to our backyard, Yellowstone National Park. Today was National Parks Day so admission was free.  We never go to Yellowstone.  It honestly isn't my favorite getaway spot but what the heck?  There was hardly a soul up there so it was nice to …


Today, I have been thinking about resilience...because I wonder if I have any or not.

I know one thing, Shelbie has it.  She has clearly been blessed with many gifts in her life.  One such gift was her voice.  She has recorded two CD's and a Single.  She started singing when she was 12.  In 2007, when she received a Wish from Make a Wish, she wished to make a full length CD and distribute it to children in the Oncology/Transplant unit which we did.   Just last week, she bumped into the gentleman who spent more than 12 hours with her in the recording studio on that Wish trip.  Funny how the past comes back.

The day came when she couldn't sing any more.  Her lungs can't support the breath she needs to sing like she use to.  So, she developed a different talent.  Photography.

She started out with an inexpensive camera, took many online classes, joined photography groups, tutoring sessions and created a business from  nothing to something!   She has a full service studio and…

Amazing Grace

The past few days have amazed me in a variety of ways.

I know I've used the IRS as my fodder for sarcasm and teased about my friendship with 'Greta' from the IRS.  Honestly, I was only half joking.  She really has been a person I wish I could meet.  I'm sure not many people can say they would like to go out of their way to meet anyone from the IRS but I really would.  She has been patient and kind.  As it turns out, my Offer in Compromise from 2014 was approved! It wasn't approved by Greta but I like to think she was on my side.

The Government has placed a lien on my house and I still have to pay $2000 but they are giving me two years to pay that off so I will manage that.  It's way better than $8000 from 2014 and another $8000 in penalties.

 I shed a few tears in relief.  I'm so glad I listened to the Spirit and treated Greta with kindness because I know that made all the difference, as well as a lot of Heavenly help and some extra faith I tried to muster…

Seek First To Understand

Seek first to understand, is a phrase coined by Stephen R. Covey as one of his 7 Habits of Highly Effective People.  I started reading his library of books when I was a freshman at college.  I didn't just read his books, I studied his every word.

I have spent the majority of my life being misunderstood.  I can't remember a time when I wasn't misunderstood.  I don't think I have ever really gotten use to it but it is what it is.

When a strange turn of events landed me at a college in the United States I had no intention of attending, I tried to look at it as an opportunity to start fresh.  What better time to re invent yourself and slip out from under the stereotypes you were stuck in growing up than to move to another country.

The odd thing is, nothing changed at all.  I seemed to attract the same kind of energy of misguided assumptions, narcissistic people and  soul-less egos covering me with blanket statements of untruth.  It was hard and never ending.  Over the yea…

Halfway decent

Yesterday was a half way decent day.  Shelbie had a burst of energy and felt much better than she has in the past two months.  No hives or itching yesterday so I think that made all the difference.  She was able to do her own laundry, clean her room and cleaned out her car that is being sold this weekend...fingers crossed.   She still has a lot of swelling and pain but we meet with a surgeon on Monday to see about draining off some lymphatic fluid.  Hopefully, if it does have to be drained, it can be done with a needle instead of surgery.  I'm hopeful.

Yesterday was also suppose to be her transfusion at the hospital.  Donated plasma only lasts in a person's system for 21 days give or take.  Each month when Shelbie has a transfusion, they test her levels to see where they are.  Her 'trough' has been around 900 which isn't bad.  If your IgG, one of the immune factors in plasma, dips to 700 then you start getting into trouble.  We have a small window of time before I …

The expiration date of sanity...

We continue to adjust to life and we continue to try to find some kind of normal to hold on to.  It has been much harder than I ever anticipated it would be.  I keep wondering what I could have done to be better prepared for what came next.  Maybe there is nothing I could have done.

I was visiting with a doctor this morning and he told me about a study that was done at the University of Colorado.  He said that only recently, has anyone thought to study the effects of chronic illness on the caregivers.  Their findings are grim.

They suggest that 7 years is about the maximum amount of time a caregiver can carry the load that is required of them to carry.  Aside from caring for a loved one, they also manage a marital/family relationship, hold down a job, and maintain a household.  Oh, and take care of themselves.  After the maximum amount of time a person does this day in and day out...they find that divorce rates, unemployment and suicide rise sharply.

I would say, I'm about 16 yea…