The Weight of Reality

As Matt and I left the consultation room, I returned to wait outside Laurel’s PICU room while Matt went to update the family in the waiting room.

As related by Laurel’s cousin Hope:  After about an hour, Matt came into the waiting room again.  This time he was MUCH more quiet and sad. He sat down, and everyone crowded around him, waiting for the news. He said that the doctors didn’t think Laurel would wake up due to the brain damage caused by the oxygen deprivation.  The doctors said that if she did wake up, she would be in a vegetative state. Matt started crying, and leaning in to his parents. Everyone got incredibly quiet, and almost everyone started to cry silently. It just didn’t seem real.

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Less than one month before Laurel died.  Absolutely no symptoms.

Matt’s dad called Laurel’s Aunt Linda.  He told her that Laurel had lost her brain function and asked her to check Rhett and Jackson out of school and bring them to the hospital to be with us.  Since Travis was only three and would not understand what was happening, we decided to have him continue staying with our neighbors.

Matt and I were then able to meet with Dr. Vernon (Laurel’s doctor) again, and with Dr. Verma (Laurel’s oncologist).  This was the first time we had met her oncologist and she was able to confirm that Laurel’s white blood cell count was far beyond what it should be.  In fact, since the original count of 716,000 white blood cells earlier that morning, she had now increased to over a million white blood cells.  90% of these cells were blasts.

Blasts are immature blood cells and are usually found in low numbers in the bone marrow. They are not usually found in significant numbers in the blood.

Dr. Vernon and Dr. Verma confirmed the earlier diagnoses.  We were able to view the newest CT scan side-by-side with the one taken in the ER.  It was clear that blood and oxygen flow were now completely blocked from Laurel’s brain.  Laurel was also no longer breathing on her own.  The doctors said they would still be willing to try a steroid that might help reduce some brain swelling if that was something we wanted to pursue.

Dr. Verma also confirmed that Laurel had Acute Lymphoblastic Leukemia (ALL) and that the sub-type was T-cell.  She said that every year one in a million kids gets diagnosed with ALL and only 10% of those cases are T-cell.

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Six years old

Laurel’s blood was very thick (blood is usually the consistency of water).  Laurel’s blood was thick like motor oil and as the blood gets thicker it has a harder time getting oxygen through to the small blood vessels such as the capillaries and papillary blood vessels in the brain.

Dr. Verma believed that Laurel’s blood had been thickening substantially over the last two weeks and that the headaches she had been feeling were probably the effect of that thick blood having problems circulating correctly.  Dr. Vernon believed this is what ultimately caused the cerebral herniation.

Nurses said that the top neurologists at the hospital were coming to look at Laurel’s scans.  They were just as amazed as Laurel’s PICU doctors at the speed with which everything happened.  They were all shocked at the difference between Laurel’s first and second CT scans, especially since the scans had only been taken within hours of each other.

Matt and I could only cry and hold tightly to each other as we thanked the doctors for all they had done for our sweet girl.  We then asked them to discontinue further medical intervention.

received_10215613082746281-1Earlier, in the Emergency Room, there had been talk of Laurel having possible stroke symptoms. I had been disheartened at the thought of Laurel – perhaps in a wheelchair – sitting by our front window watching the other children playing outside.  Watching as her friends performed the tumbling tricks she had helped to teach them.  Now, even that discouraging dream was out of reach.

By this point, we were no longer restricted on the number of visitors that Laurel could have.  Those who had been in the waiting room were now able to come and be in or near Laurel’s room.  There were some who could not bring themselves to go in.

As I approached Laurel’s room, I felt numb and I felt overwhelmed.  My baby girl was in there and I wasn’t going to be able to help her.   I wasn’t going to be able to fix this.  Mothers fix things – that’s what we do.  I felt like I had failed her.

I looked at Laurel’s little body lying in what seemed like an enormous hospital bed and I was relieved to see that my parents had finally made it to Salt Lake City from Idaho Falls.  They were alone with Laurel.  My dad was sitting in a chair on one side of Laurel’s bed and my mom was standing on the other side stroking Laurel’s arm.  They had been receiving updates on Laurel’s condition from family in Utah as they drove southward, but had not yet been made aware of her final diagnosis that had just been given.

2012

4 Generations (Laurel is three years old)

When my mom saw me she came around the bed and opened her arms for me.  I remember every movement because I was watching a mother, ready to support her daughter as we stood together unable to fix our sweet Laurel.

“That’s it Mom, Laurel’s not coming back.”  I felt her reaction as my words reached her.  I held her while she cried out to God in disbelief.  She realized that she wasn’t going to be able to help me fix things this time.  My dad’s face was pure disbelief as he looked from Laurel, to me and then back again to Laurel.  He, too, came to wrap his arms around me and offer me his love and strength.

I tried to explain everything to my parents, but in truth I’m not sure how much I really understood at that point.  My body and mind were going into shock.

Matt was also explaining as much of the new information as he could to the family in the hall, but we were soon notified that Rhett and Jackson were arriving at the hospital.

Rhett and Jackson had been surprised to be picked up from school by their Aunt Linda.  She let them know that Laurel’s headaches had gotten bad enough that we had to take her to the hospital and that she was taking them to go see her.  She was then able to distract the boys with other things so that Matt and I would be able to explain everything to the boys when they arrived at the hospital.

2015

Spring 2015 (Laurel is five years old)

The boys got off the elevator and entered the hospital corridor at the same time that Matt and I turned the corner from the PICU.  They saw us and came running down the hallway with smiles and big hugs.  They asked how Laurel was doing and they were anxious to go see her so they could tell her to get well soon.  I told them that we’d be able to go and see Laurel in just a minute, first we needed to sit down and talk.  One of the hospital social workers had arranged a consultation room for us and offered to help us explain the situation to the boys.  Aunt Linda also offered to sit with us in case she was needed.  I was grateful for their help, since I wasn’t sure if I could explain this all to them.  Rhett was only 10 and Jackson was not quite seven (his birthday was one week away).

I said a prayer in my heart, asking for guidance.  Matt and I sat together on a little couch, Rhett was on my lap and Jackson was on Matt’s lap.  I remember telling them that our Heavenly Father had decided that it was time for Laurel to come back to Heaven.  I slowly explained to them that the things taking place in Laurel’s body were too serious for the doctors to be able to fix and that Laurel was not going to be able to come home with us.  I don’t remember most of the things that I said.  Somehow it all came out calmly, and in a way that they could understand.  I fully believe I had divine help.  We all cried.  Matt and I held them while they asked questions.  Then they asked if they could go and see Laurel.  I told them what to expect when they entered her hospital room and what to expect as the day proceeded.  Matt and I then took them to see Laurel.

More family was arriving as the word continued to spread.  So many of our loved ones came, ready to help in any way they could.  I can still remember the comfort I felt by just seeing their faces in the hallway and around Laurel’s room.  I wasn’t able to speak to them all, but I knew they were there.

2015

Rose & Laurel (Laurel is six)

Before we went back into Laurel’s room, a doctor or a nurse must have asked Matt when we would like to withdraw Laurel’s life support. When Matt asked me, I gave him a response that still puzzles me.  I told him that my sister Rose would be arriving from Boise at any time and that I would ask her that question when she got to the hospital.  Rose is my eldest sibling (I’m the youngest) and it’s just always been her job to know everything.  I just knew that Rose would know the answer.  Matt just nodded and so we waited for Rose to come and help me understand.

Watching Rhett and Jackson walk into Laurel’s room was surreal.  How could I ever understand what they’re going through?  They woke up this morning thinking that Laurel would have a run-of-the-mill sick day and now, at ages ten & six (Travis was only three), they would experience death in such a painful and personal way.  I just simply could not imagine what that was like for them and it terrified me.  Matt and I would soon be grieving our daughter as well as guiding our sons through their own grief.  I prayed for peace and guidance.

After Matt and I showed the boys all of the machines and computer screens around Laurel’s room, they were able to sit and talk with her as she slept.  Primary Children’s Hospital was ready to aid Rhett and Jackson as they tried to process what was going on.  Jackson moved between Laurel’s bed and sitting with my mom or other family.  He also spent some time coloring with nurses just outside Laurel’s room.  When Rhett wasn’t with Laurel, he would go out to the big screens in the main area where the nurses taught him how to read Laurel’s vital signs on the large monitor.  He also stuck very closely to Matt, wanting to hear as much about what was going on as he could.

2017-07-07 Laurel 8-year (7)I was able to climb into Laurel’s hospital bed and just hold her.  I touched every inch of the beautiful face that I had spent years memorizing.  Laurel had such thick and shiny hair; I just stroked her hair over and over and marveled at its beauty.  I swept my fingers over her eyebrows.  I was always jealous of her perfect eyebrows.  She had inherited my mother’s eyebrows and they suited her face flawlessly.  Laurel was pale from the exertions of the day, but her lips were still beautifully pink.  They had a smaller shape to them, like mine.  What I wouldn’t give to see another one of her smiles.

I felt her arms; they were cold from all the nurses checking her vital signs.  I pulled her blankets up and tried to rub some warmth back into them.  She looked so peaceful, like she was sleeping and would be waking at any moment.  I don’t remember hearing the machines whirring, the nurses coming and going, or the family whispering.  It was just Laurel and me.

I remember lifting my right arm that was around Laurel’s waist.  As I set it back down, I wanted to place it where it would fix the hurt.  I wanted to hug her woes away or press down to comfort a problem area.  Anything to keep her little spirit with us.  But there wasn’t any one area where she was hurt – no problem I could solve – no specific area I could point at to demand my miracle.

Between sobbing and just quietly holding my baby, I remember realizing that this was all a dream.  It had to be.  It hit me as such an obvious answer to this impossible mess.  I immediately looked around the hospital room praying for inconsistencies.  I was sure that the corners of the room would be smudged and that I would be waking up soon.  I’d be able to scoot over to Matt and cry all over him while I told him about this horrible dream.

But the edges of the room were crystal clear.  So were the hospital monitors and the shoes on the feet of family members as they stood nearby.  Everything was clear.  I realized once again, that this was all really happening.

2011

2 years old

I looked at my parents as they sat next to Laurel’s bed.  I still remember when my mom looked at me, all I could say was, “Mama, she’s my Baby.”  Such a simple statement, and yet in encompassed so much helplessness and heartbreak.  It is a moment I know I will always remember.

We knew we couldn’t keep Laurel with us anymore.  I knew it was true.  I had seen the scans.  I had talked to the specialists.  I knew what it all meant.

But I also knew that what I needed most was to hear it from the Lord.

I had grown up hearing the Lord’s words – I knew what they sounded like.  They came in the form of my father’s voice.  My father is a holder of the Melchizedek priesthood and, through him, the Lord has spoken to my heart many times.

So I did it.  Probably the cruelest thing that I could have done to my Dad at that moment.  I held my baby girl – looked across her tiny form – caught the eye of my father and said, “I need to hear what the Lord has to say about this.”

1 thought on “The Weight of Reality

  1. You called with the news, I thought you were kidding
    You were always joking all the time
    You kept breathing but stopped living, held it like poison inside
    They say everything happens for a reason
    But it only makes you mad
    ‘Cause how in the hell can you believe them
    When nothing brings her back?
    It’s hard to know what she would say
    But I think she’d
    Want you to live like the world’s on fire
    Want you to love like hearts don’t break
    Nevеr look down when you walk the wire
    Likе she made it to 48, still made your birthday cake
    All the pictures on the same walls
    Looks like she just went to the store
    And when you look into the mirror
    Does it make you miss her more?
    Win or lose, she was always on your side
    Never missed a match
    And when you see the moon
    Do you remember?
    She loved you there and back
    It’s hard to know what she would say
    But I think she’d
    Want you to live like the world’s on fire
    Want you to love like hearts don’t break
    Never look down when you walk the wire
    Like she made it to 48, still made your birthday cake

    (Want you to live, want you to love)
    Want you to live like the world’s on fire
    Want you to love like hearts don’t break
    Never look down when you walk the wire
    Like she made it, she made it,
    Want you to live like the world’s on fire
    Want you to love like hearts don’t break
    Never look down when you walk the wire
    Like she made it to 48, still made your birthday cake

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