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Showing posts from March, 2016

Heart Full

I've been trying not to whine today.  The struggle is real!  Just kidding.  Today hasn't been the worst day ever.  I've tried to invent some needs in people so I could do something beyond my own little world of hurt. It helps.

Let's see...a quick update.  Shelbie has been up and around some today!  Hooray for that!   She is still dealing with pain and itchy hives but she had a productive day. She is able to walk better. Emotionally, we are exhausted and our nerves are slightly frayed and it shows just a bit.  We try to keep the crazy tucked in but sometimes, it shows.  It takes a great deal of effort to pull it all back together.

She is experiencing some new pain in her legs and hands.  This is where it gets hard.  How do I know when I need to take her in, at least for symptom relief?  How will I know if this is just some passing thing or the disease advancing and worsening?  I feel like we have a bomb strapped to our chest.  It's feeling rather crazy.

Sam is doing…

Giraffe in a laundry basket

I've never really seen a giraffe in a laundry basket but just imagine, its long, lanky legs all folded up with knobby knees poking through the holes in the side of the basket.  It's too big, the basket is too small, it overflows and spills out in an awkward way.

Physically, this is how I have felt.  Perhaps it's from living in a hospital room for nearly two weeks and sleeping in a chair for that long.  Last night, I was about to go crazy and had to move, do something physical.  It was threatening rain but I thought a quick walk and some fresh air would help me clear my mind.  When I announced my plans, Sam wanted to go and Shelbie didn't want to be left behind so she came too, in her wheelchair that Sam so graciously pushed the whole way.

It felt so good to move and stretch and feel like I had room to breathe.

It's been a hard weekend, one I wasn't expecting.  Spencer called me while I was on my way to the Women's Conference.  He started in the usual way,…

Miracle From Heaven

Happy Easter from us!

From cradle to cross...Everything he did was for our everlasting joy in life.   I too have known so many of his miracles.  I live with three of them. Jesus Christ's life, mission, purpose and atonement was God's work and glory.  Each of us, in our own little life and mission, is also a divine work, a sanctifying project, a reflection of God's glory.

My favorite artist is Liz Lemon Swindle I have many of her pieces in my home.  I added a new one to my collection and I can't wait for it to arrive.  

I have been distracted this year with the thought of angels.  It never occurred to me before, that when Christ suffered in Gethsemane, he was being watched over by an Angel.

In Luke 22:43, we read, "...there appeared an angel unto him from Heaven, strengthening Him."  Below is Liz Lemon Swindle's depiction of the moment when Christ was held up by an Angel.  Even perfect as he was, even in his knowledge of the plan, had to lean…

Don't pluck the blackberries

We made it home last night.  We stopped off at an urgent care to see about Sam's "cringing" pain as he has referred to it all week.  I appreciate his patience this week while we've been consumed with Shelbie's issues.  His pains remain somewhat of a mystery.  The only symptom is the pain so until he starts running a fever, or more nausea than he has had off and on, we will wait and watch.  The story of our little life.

Wouldn't you know it, we get home and the stupid hives flare up again.  The IV meds work way better than oral meds do but..what's a mom to do?

So, today, I am feeling slightly hungover from the diet of adrenaline and fatigue I've been consuming for several days, actually since around 1994 I think, the day I decided it would be a good idea to start multiplying some horrendous genes.

This morning, in my effort to remain open and thoughtful, I read this quote from the poet Elizabeth Barrett Browning..."Earth's crammed with Heaven…

Faith to not be healed

Last Saturday, I heard these words. "Do you have the faith to not be healed?" Just a 5 second sound clip from David A. Bednar, but I haven't stopped thinking about it. You know me, if something consumes my thoughts, I take it seriously.  In my sleeplessness over the past few days, I asked myself what that could possibly mean for us?

Yesterday, when we got the news that Shelbie does not have cancer, it became clear.  Do we have the faith to accept that healing is probably not going to be part of Shelbie's plan on earth?  Today, we are coming to terms with that idea.

This hospital stay is not going to bring any immediate answers.  The only thing it will have accomplished is stability in an acute infection of cellulitis and acute urticaria.  Tonight, the infection is controlled and easing up significantly.  The hives are not spreading as fast and in some areas, it is receding. They think that she will be discharged at some point tomorrow and we can complete the recover…

Journey On

Yesterday morning, Dr. Shami from Huntsman called me.  He reported that Shelbie's biopsy was negative for Lymphoma or any severe infection like Tuberculosis.  The most common reason for enlarged lymph nodes to the extent Shelbie has them, is cancer, of course.  The less common reason is massive infection.  Cancer and infection live on sugar so when the radiated sugar of the PET scan lit up most parts of her body, the assumption was cancer.  How could someone have in infection for a year and not know it?

I didn't really know what to say when he told me.  I think I may have said, 'Are you kidding me?' and he said something like, 'I know, but I'm not kidding you.'

I'm quite certain he has never before spoken to a mother disappointed with the news that her daughter didn't have cancer.  I'm quite certain he hasn't experienced that disappointed feeling himself, many times.  He was perplexed and very concerned.  Shelbie has all the symptoms of canc…
This will be short. At 11:00 this morning, it was decided that Shelbie needed to be transported to Utah, back to the Huntsman Cancer center.

This morning, Sam wasn't feeling well and admitted that he hasn't been feeling well for three days. He has an onery pain in his lower right side. This morning, he couldn't even make it to school. I talked to our doc at the hospital and he said to watch him close for appendicitis. When we found out Shelbie had to be transferred, I couldn't exactly watch him closely from another State so he came along.

Shelbie is not improving from surgery complications. Still. We are in the bone marrow transplant unit and the rules are strict. Only two people can be in the room. The room is pressurized and temp controlled so now I have a wrinkle in my plan. There is no internet and no phone service either.

I'm standing outside in the snow typing this because I know people are worried.

Shelbie is very upset and anxious. It's been horribly ov…

No improvements

I wish so badly that I could report that she made great strides through the night and we get to come home.  Things have only gotten worse.

We tried to wean off some of the IV meds through the night but this morning, everything exploded and has spread to the other side of her body now.  Her third IV site is failing quickly with what they call an infiltration.  Without an open, safe vein, she can't get her much needed antibiotics let alone any treatment that may be in her near future.

This morning, her doctor and I discussed options.  He said we are swiftly running out of options.  He asked us how we felt about placing a port in her chest that would be used to deliver her meds and draw blood from. She has very few good veins left and now with phlebitis in both arms and third site on her arm starting, they have nowhere else to put the next IV.  The medications she needs are extremely hard on her veins. Our major roadblock is the fact that she has Vasculitis- inflammation of her vein…


For the most part, today has been a little better.  Shelbie has been able to rest most of the day without too much bother. It was a glimmer of hope we really needed.  The doctor has been happy that the spreading has slowed right down and the infection seems to be breaking up slightly.  I really thought the improvements would last.

Tonight, things are rough again.  She ended up with an IV infiltration early, early this morning and now has Phlebitis from that.  They switched her IV at around 3am and things were better but tonight, she infiltrated the second IV.  It was an effort to get a new IV started for a third time.  Now, there is infection and phlebitis starting again in the second site.

Her body is slammed with trying to process so many different things going on, it just can't keep up.  There is really nothing more we can do for her but let time heal.  I really thought we might be able to go home tomorrow, and maybe we will but she has yet to manage this with oral meds which …


It's been another crazy day or two.  I ended up having to take Shelbie back to the ER Friday night.  This infection and hives are growing exponentially.  I have never seen anything like it before.  By midnight on Friday, the decision was made to admit her.

I was having a really hard time.  They sent her for x-rays and a 'shadow' showed up that made the radiologist wonder if something like MRSA was setting in.  That was the defining moment when we all knew being at home would be a mistake.  I was really anxious about another x ray, more radiation. I was also really worried that all the treatment they were suggesting was going to make whatever she had going on, go crazy and run wild in her body.

This morning, we met with the Hospitalist.  I love him!  He is the epitome of compassion.  Dr. Bates was wonderful and patient as I brought him up to speed on her history.  I asked him about doing more harm with all the things we were doing to try to slow this infection down.  He sai…

Worse Again.

Not much to this post other than Shelbie is worse than she was yesterday.

Yesterday, the cellulitis infection was about 6" in diameter.  Hives began covering the area even over the infection.  This afternoon, the fiery hot redness is easily 8" or more in diameter.  You can no longer see the defining line of the infection for all the welts.  Welts on top of Welts. Welts from her waistline nearly down to her knees, every inch of her skin.

Imagine the worst diaper rash you've ever seen...bleeding, weeping diaper rash and that is what Shelbie's leg and abdomen looks like...only it's obviously not diaper rash.  Obviously.  Benedryl is about as effective as Smarties.  

On top of that, the lymph fluid is still building up and that adds to her discomfort.

She doesn't complain.  Shelbie sleeps about 21 hours a day.  She has zero energy or stamina.  When she is awake, her brain function is slow.  She isn't taking pain meds or anything else that would have the eff…

And another...

Another incredibly hard day today.

Last night, I ended up taking Shelbie to the ER at around 1am. It wasn't because she was asking to go.  She has been more than patient with things.  I keep saying, "Let's see how it is in an hour."  or "Let's wait until morning, I'm sure it will get better." And she believed me.  She trusted me.

Close to midnight, I had this strong impression that we shouldn't wait until morning to be seen. Even with strong impressions, I tend to err on the side of conservative because I've been conditioned by doctors who have made me feel like I made mountains out of molehills.  So, instead of always feeling like a 'frantic mother' even though I never act like one, I always wait things out longer than I should.

Honestly, this disease embarrasses me!  I avoid regular tests and check ups that specialists have advised me to do because I can't stand people thinking I drag my kids from one doctor to another just be…

Post Surgery

Today has not been a good day for Shelbie.  As she said earlier, "This has been the most traumatic 36 hours of my life."

Last night, the area around her incision started getting really swollen and red/purple.  It had definitely doubled in size from a couple hours right after surgery.  She was frantic about it.  I couldn't tell if it was hot to the touch or not.  Nothing I tried would calm her down.  I finally convinced her to take something for anxiety and try to sleep.

By morning, it was the size of an orange so I called the nurse to see what we should do.  She had me send her a picture which I did.  After she consulted with two other nurses, and two Residents, they had no clue what was happening.  "Honestly, we haven't seen anything like this before."  She paged the surgeon and the consensus is there was a significant amount of damage to the surrounding tissue and it's likely deep bruising more than infection but if it continued to get worse we would…

Playing Possum

Ya know how they say, God doesn't give you more than you can handle?

Have you ever wondered what would happen if you just stopped handling things?

I did today.  I wondered what would happen if I threw myself down in the middle of the surgical suites and kicked and screamed and then just melted into a drooling mess of tears, crying UNCLE on the way down?  Then, just lay there with my face buried in some paper scrubs and then just peek out every now and again to see what God thought of that.

Do you think he would stand there and say, "Okay.  I guess that's more than you can handle.  FINE!  Enough is enough! Have it your way.  You win!  Are you happy now?"

And then...I would jump up and giggle and run down the hall clicking my heels.

Ya...probably not.  He probably doesn't fall for playing possum with how you handle things.

Actually...he would probably just stand there with his arms folded, tapping his foot and say, "Good grief, get up!  Stop playing around.…

Holy Week

I have been pondering on the upcoming week of Easter.  With the trials we have been blessed to experience this year, I have come to know my Savior more than ever.  I have reflected daily, on his life and his mission.  Each day, regardless of my mood, I strive to picture him close to us.

It seems fitting that next week we commemorate his death, and over the next two weeks, we embark on the peak of this particular trial with Shelbie.  For weeks now, we have been anticipating surgery to move us closer to what we hope and pray will provide answers to her failing health.

Next Sunday is Palm Sunday. The day Jesus Christ entered the walls of Jerusalem.  He knew what the week would hold.  He knew of his divine mission.  He knew that the very people who would betray him, would be the ones he would carry their burden of sin for, as much as he would carry mine.  In the days leading up to Gethsemane, he would deliver some of his most moving and poignant lessons, even mighty miracles.  Simultaneo…

A visit from the IRS

Yes, you read that right.  THE IRS. The Internal Revenue Society...or whatever the 'S' stands for.

Remember back in 2014 and my $8000.00 tax bill?  Ahhh...well, I filed for a tax compromise because it was a little far fetched that someone with an income of $33,000.00 should have a tax bill of $8000.  I haven't heard a thing from them since I filed that a year ago.  I got a letter every now and again saying they were still deciding if they would accept my offer and I did not need to do anything. So, I haven't done anything about it.

Well, Thursday afternoon, they caught up to me.

Greta called.  Yep.  Greta from Memphis, Tennessee. Greta, with her big, deep, Southern voice that was very hard to understand...not a timid, shy, Scandinavian Greta as one might think just from the origins of the name, 'Greta'.

Now, granted, I have been a little disconnected, spacey, lost in life, lately but I do try to learn from my day to day experiences.  So, as my heart was skipp…

Never have I ever

...had such a strange week.  Two phones call this week I never dreamed I would have ever had to have.  I had the shear pleasure of talking to the IRS yesterday, in a not so fun conversation and today, I had a conference call with the nurse of our new surgeon.  Never, have I ever thought I would be adding a Complex Surgical Oncologist to our team of doctors.

Now, I understand a little more why we had to wait a week.  The surgeon who we were going to be scheduled with is just a general surgeon.  They switched us to a Complex Surgeon, specializing in Oncology.  I guess I'm grateful for that but at the same time, it worries me.  Of course, my mind is having a hay-day trying to read into the change.  I feel like they know more than they are telling us.

The weight of our situation is starting to settle in and it is quickly becoming a nail biting experience.  Getting through the weekend is going to be tough.  The nurse said that Shelbie can't take anything other than Tylenol betwe…

It's better to stumble.

On a forum today for Shwachman Diamond Syndrome, one young mother commented that I was her Yoda.  She is just one year into raising her little son with SDS.  He has already had so many difficult problems.

I am nobody's Yoda I can promise you that.  As I responded to her, I remembered our family mantra some time ago; "It's better to stumble down the right road, than to run down the wrong one."  This was my response to her.

"I feel like I spend more time dusting off my knees and wiping dirt from my face for all the stumbling I've done rather than being confident in any part of this, let alone 'doing it right', whatever that is."

This week, I have spent more time feeling beaten down and even trodden upon as I stumbled to find my footing.  It's hard being so human.

Monday was something else!  We managed to salvage the day but not without some scrapes and bruises to our earnest desire to be trusting, courageous and hopeful.

Tuesday, I was dusting …

Worst. Day. Ever.

Anytime Shelbie sees me getting frustrated, upset, or stressed, she says, "Mom, relax.  Stress causes cancer."  I don't think she's really trying to be funny.  I think she is genuinely worried about the levels of stress we can feel around here at times.

Today...the levels were toxic.

11:00 am, I made a few calls to the surgeon who I was told would be doing Shelbie's surgery just to see if they had a date yet.  Left a message.

11:10 am, got a call from a nurse saying she had a date for Shelbie's surgery- tomorrow!  Tomorrow, bright and early in Salt Lake.  I panicked.  I puked...and then I made a million phone calls to cancel my work schedule for the week.  The nurse was from a different surgeon's office than the one I had been calling.  I asked why they had changed our surgeon and she said this doctor was a better fit for the case.

12:15 pm, I pulled it together.  Focused.  Prioritized what remained of the day.  I had committed to make two birthday cakes …

Small Sifting Holes

On Sundays, I try to take some time to refuel my spirit.  Part of that exercise is to read something helpful or uplifting.  Lately, I've been reading a Neal Maxwell book, If Thou Endure It Well.  He is by far, one of my favorite writers.  He is poetic in the words he chooses and I love that.

He says that irritation often precedes instruction..."If we aren't careful, small things become the small sifting holes through which our resolve trickles away."

I love that reminder.  I have been dealing with a lot of small, sifting holes that do nothing but irritate and frustrate me.

For example- the darn, stinking car of mine!  It's just an irritation more than anything but the fact that it keeps having stupid issues puts me over the proverbial edge.  It's been in the shop now since Thursday and I think, this repair place actually knows what they are doing.  In fact, shout out to the Pro Shop...The front end girl Ashley has been amazing.  She has been so sweet and com…