August 2012 - "Calm Before the Storm" - Vball NET PHOTO

Today, Monday, we were happy to be taking labs at home, having made it through the weekend.  Steaks, activity, prayers and of course a boys sheer willpower helped an amazing weekend happen! Not as much volleyball due to decreased energy, but still a healthy amount of steak!Courtney, Davis, Ryan, Jeff and I were able to go to the Bountiful temple on Friday night and do baptisms.  Davis has been preparing to receive his patriarchal  blessing and due to the medication schedule is not able to fully fast, thus he wanted to make going to the temple happen in preparation for the blessing.  The spirit was calming and profound as I proudly and humbly was surrounded by my three kids and husband in white.  I have to say the "always being aware of germs" was put to the test as 25 teens from a ward were ushered in to the font to be baptized before our turn.  However, as I leaned over to tell Davis to keep his mouth closed, he simply replied, "it's blessed water, no worries."  Tender emotions filled my heart, then floods of raw uncertainty would fill my eyes with tears, then the overwhelming warm peace of being in the temple would bring me back to my senses and I was able to concentrate on the purpose at hand.

Saturday morning brought a beautiful spirit as we visited with Patriarch Pincock prior to the blessing. Courtney was able to be there, bringing her incredible love and spirituality as well.  Words cannot describe the emotions felt by all.  Davis was truly speechless with the emotion and strength of the spirit.

Saturday and Sunday were filled with a family wedding in Provo that Jeff and I attended and extended into a 22nd anniversary get-away.  Early for August 30th, however, ceasing the moment is a daily necessity!  We talked and reminisced about meeting in Provo over 24 years ago and visited a few of "our places!"  Recalling just how complex we perceived life to be at that time...we both agreed we were glad we had no idea and had a moment of longing for those simply complex days!

That brings me back to today and labs.  We waited all day from a noon blood draw to 8pm before we had any results.  As much as we try to guess the outcome, there is always the anxiety of it worsening, and yet the hope of the numbers being better as well.  Anticipating and hoping for better numbers, he made arrangements to begin working on the car(with a mask...or two) and we went swimming at a private pool one last time. It was great fun and full of energy, as if nothing was attacking his body, as he threw the little kids around, swam and even "practiced" with Emily how to do "the hold" and go under water for her upcoming baptism.  They are both looking forward to that special day.  We are all hoping for and anticipating that day.

Unfortunately the numbers did not go in the direction needed for a thumbs up on working on the car tomorrow or perhaps swimming, however, that was already done. So I pray for the chlorination to have killed off any potential bugs.  One important number out of 20 or so different results came back slightly higher, potentially indicating that his body wants to make red blood cells, not the red blood cells themselves, but we hang on to any potential possibilities!  We always try to find the positives among the negatives.  Davis' response tonight with that news was, "the calm before the storm!" my mind went to a different storm ahead and his was on the task at hand, "all the other cells lines are calm and low, because the storm of red blood cells that are just waiting to be made!"  He continues to be more energetic in the evenings and surprising us all considering the extremely low levels of oxygen in his blood. He has even been taking and drinking mounds of wheat grass and  lemon grass that are supposed to boost the bodies ability to produce red blood cells.  Maybe a desperate attempt, however, something that he can control and do...so we do!

Tuesday brought another day and with the lower levels, less cardio is happening, however, strength workouts are the "new norm" for the moment!  With the bursts of energy, they let him opt to try and hold off on the blood transfusion until Thursday. His immunity dropped to zero again and he decides it is better to not have the transfusion that might temporarily increase his energy, because "I can't go any where any way so it's easier to feel tired and not want to go so bad." It is likely a blood transfusion will boost his levels...of course he says just until his storm of red blood cells decides to happen!  So the house is scoured clean yet again as zero immunity(neutropenic) precautions with laundry, food; no raw fruits or veggies, deli meats, partially cooked eggs or uncooked pepper etc., no live plants...that's okay, I am horrid at keeping them alive in the house(so we moved the two potted-mostly-dead plants out to the garage) and friends/visitors precautions are once again set in motion.
It's just such a bummer to have the house so spotless and no one can come and enjoy it with us, but all worth it if we can keep the fungus and or any other infections away this time around!  No worries, I am still in the Faith not Fear zone, but feel I just want to do what we can as to prevent as much as possible!  When we read that "back in the day"...they used to place the patients in isolation in a sterile, small environment,(Boy in the Bubble) it makes the efforts of being able to stay home easier, less restrictive and all that more comfortable!
Wednesday was relatively uneventful.  Actually that's not correct...I made time to go for a walk and then decided at 9 am that I would work in the yard and garage before I had to shower upon going inside.  8 hours later, and a few taxi rides to friends, soccer, football and the gas station, the lawn is mowed, the trees and garden trimmed and weeded, preen spread, veggies picked, the fridge and freezer in the garage gutted, scrubbed and organized!  I love being outside and felt quite accomplished for the day!  Jeff gets home tonight and after this week, I think we will both sleep soundly.
Thursday brought labs that had the staff in astonishment that Davis was walking upright!  His body was so depleted and thus pre-medications, 3 units of blood and 1 unit of platelets were ordered.  We settled in for the long haul and were pleasantly surprised when all areas were on task today and we were in and out in 71/2 hours!  He tolerated the transfusions well and began to make huge plans for the borrowed energy and platelets.  The plans would have to wait as the car ride home cat nap was not enough for the exhaustion of the week and he went straight to bed, well after a shower of course and slept the night away.

The weekend was pretty mellow, except for the opportunity to go to the Saturday night Drag race at Rocky Mountain Speedway with a friend, Thanks CJ and CJ's grandpa!  Immunity was such that church was attended on Sunday and Monday night brought family photos, ribs and the completion of the backyard PVC volleyball poles and net!
Full circle week, how fast the days fly when you are...having fun!  A masked Davis was able to work a day on the car, which was very empowering for him and even attend a football game with friends. Courtney starts back to UVU tomorrow and preparations have started for an anniversary week full of back to school nights, football and soccer, ahhh! the Fall busy-ness is beginning.

Our lives are defined not by the challenges we encounter,

but by how we respond to those challenges.
- Jonathan L. Huie

P.S. - The STORM is HERE!
I was waiting on photos to have with this post and as I waited, another week has somehow come and gone. Appropriately titled before this past week...I feel the calm is now over and the storm is brewing.  It's Friday and I am up in the middle of the night with some heaviness as we continue to try to have some semblance of normalcy, I know, that's like a swear word around here.  I had an opportunity to once again be a part of the Miss Utah Wheelchair pageant this last weekend and it was said there that the word "fair" or "it's not fair" is like saying a bad four letter word!  My level of emotion has been heightened this week as I try to remain strong and prepare kids for college, 11th, 8th, 6th and 3rd grades!  I have to say there is just something not regular about our days right now.  As much as I would like to be just commonly stressed (whatever that is), the rush of ab-normalcy keeps creeping into my being, my days and my nights!

Instead of feeling like he was a boy who beat this thing, and we could all move forward, we all feel as if we have been here before and done this before!    The anticipation to be a junior with no meds and restrictions has faded and there is just nothing regular about scheduling a bone marrow aspiration surgery the first week of school and watching everyone make plans for homecoming and football games.  My heaviness tonight is that of life's expectations not being what you dream sometime.  I know, I know, not my first realization of this, however, some days are just easier to be content with that than others.
I was so grateful for the inspiration and rejuvenation of the wheelchair pageant this year for me.  The strength and abilities of these amazing girls to go far beyond obvious physical limitations is abundant and contagious.

This year the intensity of what goes on in lives behind the outward desire to inspire and live, is truly a testament to me as to the strength of an individual.  Davis is constantly humbled at his limitations being of an inward nature and grateful that he can sometimes "pretend to be normal, because no one can see!"  I appreciated the realness of this year as there was talk of how difficult it is to navigate life with such limitations as paralysis.  How intense it is to regain and figure out just who you are if it was a recent injury that changed your ability to physically freely move about the world, or how to find your purpose if you have never known walking or standing as the American flag passes in a parade.  I am consistently in awe at the challenges that people around me are asked to endure.  The refiners fire is burning hot right now in the world.  Whatever your dreams were for life...I am beginning to feel that the purpose is to function within the ever changing reality that many of those will change throughout your life.

Joy is what happens to us when we allow ourselves

to recognize how good things really are.

- Marianne Williamson

A beautiful anniversary date night and walk around the temple grounds reignited my dreams of so many years ago.  I couldn't have possibly known or felt where I was headed.  That I think, is the beauty of the ever changing life.  If we knew...we would often turn away, run and never experience!  I find myself, out loud making a list of the good things on a daily basis as the not-so continue to close in and surround.  The phrase count your many blessings has been in my head constantly lately as Satan is working overtime to get me to dwell on the negative side of the list.  There are for certain many many issues that keep piling up on the undesirable side, however, if I take the time to truly look around and choose to seek the good, the other side can grow and crush it's counterpart. (mini-meltdown now over)  Faith not fear, faith not fear, repeat, absorb and apply to life!

I hold my course with focused attention

and relentless commitment,

as I weather the storms of life.