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Showing posts from July, 2016

Instead of Shoes

The youth in our ward just returned from a pioneer trek at Martin's Cove and Rocky Ridge.  In church, some of the youth spoke about the adventure.  There were a couple of talks that were outstanding.

One of the speakers told a story of a pioneer who was crossing the plains in the winter and had no shoes.  His feet were obviously in very bad shape and should have been amputated but he knew that if the rescue team coming for them, would bring him a pair of shoes, he would be alright and his feet would be spared from amputation. I'm sure this young man offered fervent and exhaustive prayer to be gifted a pair of shoes for the remaining journey.

The rescue team did arrive but there was not a pair of shoes for him.

Instead of shoes...

He was given a blessing of healing.  His feet were miraculously better the next day.  Completely healed and he walked the remaining leg of the the winter...on a rocky ridge of ice and snow.

The story wasn't expounded upon …

Week 2

Last night, very, very late, we got home from two long days at the University of Utah hospital with Cardiology/Pulmonology.

15 hours in clinic
4 CT Scans
6 Pulmonary Function Tests
7 IV's
3 VO2 Stress Tests
3 Echocardiograms
3 Electrocardiograms

...half a dozen or so little melt downs of frayed nerves.

We got some good news but we mostly got the news that at least two of the kids are advancing in their lung problems.

It's so very complicated.  I suppose the reality came slapping back in our faces that the best doctors in this country have never treated such a rare disease so all they have to base their exam on, is the normal, healthy-ish public or even the yardstick of the common diseases they deal with on a daily basis.

Let's start one by one...

Shelbie- There has definitely been an increase in growth of her granulomas in her lungs and Pulmonary Arterior Venous Malformations that are scattered about.  Sadly, there are many AVM's that are too small to fix but big enough…

We come. We go.

One of my favorite quotes is by Rod Steiger...

We come. We go.  Somewhere in between, we try to understand.
Sometimes, I think I come and go from my own life so much, there is more, I realize, to learn about myself and try to understand.

We come and go from each other's life as well and hopefully, in that process spend more time trying to understand than judging.  After all, in many cases, it is in the understanding of others where we learn about ourselves.

This week, a girl from my ward had her first baby.  I don't even know this girl.  I know of her but I have never even been in close enough proximity to her to even say 'hello'.   Through the ward Facebook page, I learned that her baby would be born with some health issues.  Some pretty serious issues.  Her internal organs were growing outside of her body, called an omphalocele. She also has an opening in her spinal chord and problems with her leg.  Pictures were posted of this little angel and prayers requested.

As …

The Width of Life

Today didn't exactly go as planned.  Not in a bad way, in a surprising way.

9:30 this morning, I received a phone call from one of the hospital administrators who asked if Shelbie would be willing to have her picture taken to hang in the hospital in the new infusion therapy department.  I was really surprised!

The administrators decided that they wanted black and white photos of some of their long time infusion patients to hang in the corridor of the new infusion therapy.   It was even more fitting that it so happens that their long term infusion patient is also a patient at Huntsman Cancer Center...Oh, that is fitting because our hospital is officially a satellite cancer clinic for Huntsman!  Yay for mighty miracles! This is huge news which I will elaborate on later.

Shelbie was excited to participate in this way and hurried to get ready for professional photos from the hospital photographer.  Along with her picture hanging larger than life in the new unit, they asked her to in…

Black Box Warnings

Today was a pretty simple day at the hospital.  We were at the University Hospital to follow up with Immunology and Shelbie's new dosing of IgG.

Our doc was pretty happy to see that Shelbie seemed much better than she was 3 months ago after having been through a rough biopsy and 6 weeks without IVIG, since we were transitioning care from local providers to specialists in Utah.

The question in his mind has been, are we doing more harm with the IgG treatments than we are good?  He seems to be a real numbers guy and I often feel guarded when it comes to talking about lab results.  There always seems to be a huge gap between her low, somewhat normal labs and the way she feels.  It was good to have that 6 weeks without a treatment so we could see how she did.  She was sick all the time and had to be on antibiotics.  So, in my mind, it's a no brainer...the IgG replacement is definitely giving her a better quality of life.   It also stabilizes her platelets which bounce around.


Universal Lessons

What a week of lessons from the Universe... Coincidence, it what you want.  I call them postcards from Heaven...the little things, messages, that remind us there is something bigger at work in our little life.  Things that a loving Heavenly Father needs us to learn.  I even picture in my mind that these little postcards are signed by God himself with the tag line...'Having a wonderful time! Wish you were here!'

The tagline on my return postcard, would likely say..."In case you were wondering...Life is hard.  I wish I was there too."

But I'm not there.  I'm still figuring things out here.

Earlier this week, I was in the Temple.  It was the one and only time I have been in the temple and felt more agitated and anxious than I felt outside of those sacred doors.  The temple has always been the one place when my heart is still and mind is clear and I can become one with my Father in Heaven.  I can be still...really be still and figure some things out…

Chasing Carrots

A couple of weeks ago, I was cleaning for a friend and she showed me an art book she had by James Christensen.  He is a science fiction/religious artist I guess you could say.  His characters are just that, characters borne from his imagination yet are rich in layers of deep and thoughtful meaning.

I knew of this artist and have seen his work around but never really looked much deeper until my friend pointed out to me what some of his paintings meant.  This is one that really stood out to me.

He calls it, The Burden of the Responsible Man...

It kind of made me laugh because the guy is carrying a Hedgehog...Shelbie's Hedgehog has become my little responsibility since she hasn't had any energy to take care of him. So, he is just another little piece of baggage to add to my growing collection.

James describes this painting as one that he did when he felt burdened and overwhelmed with everything he had to do and all the expectations that people placed on him. He said he felt lik…


It's been a long time since I let so much time go between posts.  Life is hectic and a little stressful these days.  So, today I will just hit on the highlights for the week.

Spencer got home last Sunday and his main squeeze Abby has been here all week as well.  She is lovely and delightful.  She carries with her this sense of calm and peace.  Her spirit is so sweet and she seems to just be part of the family.  It has really been awesome to have her around.

The bathroom is coming.  The boys tackled the tile laying earlier this week and today I grouted and painted. I'm not happy at all with the grout so I think I will re-do it early next week.  It's not the brand I am familiar with and I didn't love how it went in.'s progress.  I just have to finish the vanity and then get the plumber over to hook everything back up.

There have been some stressful moments this week- our oncologist had to cancel our appointments for the 20th.  The only days he could re…

Happy Fourth

Happy Independence Day!  I didn't do much today.  I had to work this morning and then the Wasband invited me to have lunch at his place with the kids and his niece and nephews that are here going to school from Indiana.  Sam invited some friends, Shelbie had a few over and Spencer brought his main squeeze Abi.   It was a great crowd and Brian always has tons of food and some really great yard games. 
I wasn't there long, just about an hour but it was fun to visit with everyone and watch them enjoy each others company.  I will always be grateful that my Wasband and I can get along and do these fun things for the kids.  Truth be told...he did all of it!  I offered but I think the 4th of July is his favorite holiday of the year! 
He spray painted a giant Twister game on the grass, had a massive Jenga game he made out of 2x4's and a life size Kerplunk!  After I left, they were joining the neighbors on their huge slip and slide that runs down the hill they live on and another …

Something great is about to happen...

Or is it?

I've decided that we grow up on fables.  We raise our kids on fables; fables or stories that explain the reason for things, the morals of life's lessons.  They seem to make sense, they are comforting and so we invest a lot of hope and a lot of faith in the fables.

I think it is human nature to have this intense desire to make sense of things.  We rush to put meaning on the events of our life, even elbowing God out of the way.  It's especially critical, we think, to do this with the trials that really set us back, test our faith, drain our resources.  We try to silver line it, find the good, express gratitude for the tiniest mercy or blessing.  We feel our way through the dark of the hard times,  holding on to the hidden meanings we search to rescue and puzzle into place.

I've lived my life believing, that if you live all of the commandments, if you are obedient and kind and charitable, your family will be blessed and protected from the adversary.   I believ…

Looking Ahead

As our Pulmonologist, Dr. S promised, she met with our Cardiologist Dr. W. on Monday afternoon to discuss Shelbie's situation.  I've spent a great deal of the week, working with the Medical Assistants to get all the testing scheduled and our team assembled and appointments with each specialty co-ordinated.  After all that work, a nurse called me yesterday to say she wanted to move Shelbie's appointment with the Oncologist a week ahead, leaving the two boys.  I would have normally said yes but the thought of redoing everything we have worked so hard on this week, felt like a bridge too far.  It would be impossible to three other docs to move their schedules so we could come a week early.

It's going to be a heap of things and it will feel a little crazy. I was hoping to do the testing in the next week or so but we have to wait until the end of the month. So, it will all be done between two weeks and some very busy days.  Lately, the Wasband has been joining us on the m…