December 2012 - I scream, you scream...Let's all scream! - DONE

December 2012

Sometimes it's not all good! The past 48 hours is prime example of cherishing every good moment and savor it so you can recall the good when life gets rough again.  We had an amazing break for a few weeks and I think it is still a positive to have the hope that this is it, this is the turnaround weeks we have been waiting for to happen.  Davis had gradually become a bit slower and he knew he would need a transfusion soon.  From labs on Monday, we had hoped for no platelets and another increase in a few more labs.  Unfortunately this did not happen. 

I have to admit it was a bit of a punch in the stomach for a few hours as we waited to go in and then labs came back indicating the need to go in earlier. I do not see the defeated look on this boys face very often, if at all, however, when the hope of going to school in the next few weeks was once again discussed and declined, my heart broke at the disappointment in his eyes.   

He ended up with 3 units of blood and 1 of platelets and once again high concern for his kidney function.  This of course is a long and tedious day.  The premeds and transfusions wipe him out.  He was pretty weak and very pasty white when we got there and was actually eager for the energy that the blood transfusions could offer.  We walked the halls between one of the bags for a stretch, however, he wasn't able to go as far as he usually can.  

For some reason cell phone coverage and Internet was down on the transfusion dock today thus making it hard to communicate or get any thing done.  Some letter came in the mail about yet another issue with insurance that I spent half the morning trying to resolve. The clinic was unusually saddened with the loud frustrated cries and screams of kids who were yelling their discontent with having to be there...one feeding off another and so on. I wanted desperately to join in and scream with them today. Just found out Courtney's car was towed from a parking lot in American Fork last night, with a bail of a couple hundred dollars.  Calling on this finding this is quit a positive revenue builder from students in Utah County.  Perfect, glad we could contribute! I write this not for a pity party...we had that for a brief moment, now we are moving on.  I write it for the mere fact that we continue to learn through this process that the forces of the adversary are alive and well and attempt on a daily basis to decrease hope.  

As I walked the halls of the hospital, the halls are decorated for Christmas and a tree on the unit had the theme of Believe in Miracles.

I remember to breathe.

Miracles I believe in and hope for...it's the stress and uncertainty of waiting that decreases ones defenses and allows that window of opportunity for doubt and fear to creep in.  Lack of sleep doesn't help either.

We were uplifted as the transfusions were done one by one and no adverse reactions took place.   While we were there, I received a text from the mom of the cute 16 year old girl from Idaho that we met in the hospital a few weeks ago.  We exchanged notes and stories of the happenings of the kids.  They too had experienced a rough week and we each tried to console.  I shared with her the one message that I was able to pull off my computer for the day; 

I am determined to be cheerful and happy

in whatever situation I may find myself.

For I have learned that the greater part of our misery or unhappiness

is determined not by our circumstance but by our disposition.

- Martha Washington

We determined that both of our kids are prime examples of a positive disposition.  I am inspired by the many faces, stories and new friends that we have met over the years.  The strength that resides within the halls of this hospital is tangible around every corner.

As we walked out of the hospital this Thursday, I noticed his face becoming splotchy and red.  When I made the comment that we might be heading back in to see if it is a reaction, he just confidently replied, nope it's just some color returning to my face and it was!  By the time we got home, his energy was a bit renewed along with his color!  He had to drink a full liter of water in the night to help flush his kidneys.  He woke a little tired from being up and down all night, however, promptly took a pre-calculus test that he had been waiting to take until he had a clear mind.  He was thrilled when done, for this completes term one and now he can begin to catch up on term two...day by day!

I am so grateful for this boys amazing disposition that I learn from each and every day! 

The full measure of a man is

not to be found in the man himself,

but in the colors and textures that

come alive in others because of him.

- Albert Schweitzer 

December 2012 - Make room for the good times in life! - DONE

The innermost thoughts of Courtney going through the temple are reserved within my heart.  

However, the outer expressions of motherly love and admiration are endless. I am so impressed by Courtney's diligence in preparing to enter the temple and serve a mission.  The strength that she has at 20 is awe-inspiring.  I  am in complete amazement when I hear and see her accomplishments on a spiritual level.  I am so excited and also nervous for her to serve in Argentina.  The main emotion is one of complete peace and happiness.  Not to say that there is, however, also a need to curb the uncertain feelings of the unknown.  This is a dream come true and a proud moment as a parent.  As she gets closer and closer to leaving, I realize just how much it is all about her and her life, and I will intensely miss having her around.  Although she is incredibly busy working as  a nanny, at the bake shop, as a CNA and tutoring to earn money to make her mission a reality, she always comes home at night to talk of her day with me.  I will miss our nightly conversations and knowing she is safely in for the night.   I am reminded of a song that I heard when Courtney was first born.  The chorus was along the lines of... from God's arms to mine.  I now feel like I want to feel peace in my faith of the encompassing arms of a loving Heavenly Father surrounding her for 18 months.

December 7, 2013 - David's, dad and mom, Courtney, Uncle Rob, G and G Wintle
(Grandma Cox was there, but missed photo), Aunt Jaclyn and Aunt Julia
also friends Spencer Higgs and Jayden Anderson 

Emily's brownie troop headed to Build-A-Bear workshop and had a great time bringing many different bears to life for children at Primary Children's Hospital. After kissing the heart of the bear and making a wish for the child who would receive it, we headed to the hospital.  Emily named her bear Murphy Davis!

(Murphy for our shelf Elf and Davis for extra love for the children at Primary).

The Turning Place Christmas
Dance recital!

Emily and Cozette 

3rd Grade telling of Christmas traditions:
St. Nicholas Day! 

Daddy-Daughter Hawaiian day
at Girl Scouts

I was so encouraged by the past few days that I thought I felt strong enough to attempt a pre-holiday cleanse!  As Courtney and I try the 3-day Dr. Oz cleanse, I am surprised at the amount of fresh fruits and veggies that we can consume.  Going into the blender it was colorful and beautiful.  Coming out...well, I will spare the details.  After day one I was great, not hungry and feeling very energized, I can do this!  Day two; the 22 oz. of lime/spinach/kale green meal seemed a bit bitter and overwhelming to finish.  I wasn't even interested in a snack this day.  By dinner day three, I was vowing I would never drink my meals again.  I did do the same cleanse in part-solid form and some liquid a week later.  I like that much better.

Beautiful going in!

Questioning the meal in a bag?especially the lime green lunch one! give me chewing meals over drinking them any day!

I cry at the commercial,...which is set to music and has a child's voice narrating, "there are man eating sharks in every ocean...but we still swim.  Every second somewhere in the world, lightening strikes...but we still play in the rain.  Because bad things can't stop us from making life...good.

November 2012 - Optimism 101 - DONE

November 2012

Today was a testament to the power of optimism!  As we headed to our "routine" Thursday visit after a weekend of 3 bloody noses, platelet transfusion and a trip to the ENT, Davis assessed his current (Thursday ) status and placed guesses on his numbers.  Here lies within the uncertainty the power of hope as he boldly says we will be in and out today without transfusions! 

The ENT visit was on Tuesday and he had an hour of numbing and scoping and culturing! They cauterized the blood vessels in his right nostril, which is where the 5 surgeries took place in 2010 and also where 90% of the nose bleeds and oozing come from.  Go figure, Wednesday, the left side bled!

That brings me back to Thursday!  As we waited for the IV team to become available, we needed to take a time sensitive lab, so the suggestion was made that we just draw the lab and then if needed an IV can be placed later.  This would require two pokes, but he was okay with that.  Then he quickly told the nurse that he would not be needing the IV at all today and we all placed our lab number guesses on the table!!  He was so convincing with his optimism that the nurse came back in and said that she was taking his lead and had canceled IV team.

Lunch was ordered and meds were taken while we waited for lab results!  We didn't even get done with lunch before we were told that Davis was the closest to his numbers and we were free to go.  This is cautiously optimistic of course, partly due to the fact that the higher numbers are considered borrowed numbers from the steroids that he is taking...however, we will take it and borrow!!!

The drive off the snowy hill was beautiful and we were both grinning to be headed home.  He said, "know it's not that different than an hour or two hours ago, but I feel better just knowing that I am good for today."  We had a great time home today doing regular activities and catching up!

Happy Snow Day!

Success is a state of mind.
If you want success,

start thinking of yourself as a success

November 2012 - 17 days - Relish in the Good! - DONE

I'm writing an update prior to Thursday for one big reason.  We do not have to go to the hospital this Thursday!!!YAY! (baring any rise in symptoms of course)  Labs were such on Monday that they felt like we could have a break from the regular day!

We are for certain learning to take the bad with the good and relish in the good while it lasts!  The past few weeks of steroids have given Davis better lab numbers, however, at the beginning was messing with his medication levels.  As the steroids have worn off, we are hoping that some of the good numbers are coming from his body beginning to respond to the treatment.  Thus the reason that he was able to make it for the 17 days without a transfusions. YAY!  I know you may say that 17 days is not very long, but have you ever tried the 17 day diet...believe you me it's a long time!! I tried it recently and didn't quite make all 17 days, especially with a road trip in the middle!   As of last Tuesday's transfusions, we are going on 8 days...and counting optimistically to break the 17 days without transfusions record!  

We took a leap of faith last weekend and went on a road trip to St George!

Ryan is "masterful" in his platform jumping.

Slot canyon hikes are a huge favorite

The "Pioneer"  hot tub!

Serious game of Chess at Cracker Barrel !

Picking cotton at the Brigham Young House

We could live here!

St George Temple

Life is GOOD!

We were hoping to have better weather and have some different scenery to take in, experience regularity and fun for a change.  Staring at the same four walls around here is becoming rather boring!  

We were able to stay in a generously offered condo for a few days. THANKS LIFFERTHS!!  The hospital was close by if needed, however, we only waved as we passed by the doors, optimistic that we would not need a visit this time around!  The weather didn't quite cooperate and Jeff was delayed on a business flight and Courtney had to work so they were unable to join us.  It was still so fun to see smiles all around as we had good enough weather two of the days to hike and swim.  

Davis was willing himself to participate in all the activities possible as he still has a bit of immunity(not enough to do most things), but enough to have faith that he will be protected if we venture to try a few needed sanity boosting activities here and there.  I am so proud of his continued determination to try, despite his own recognition often times in the middle of trying, that his body just won't do what his mind is willing!  He endlessly remains positive and just readjusts to a different level. 

  
Let's just say that Emily was thrilled that his level kept him close to her this trip!  He was her hero, as he hiked along side her and helped her up and down.  She clung to him and they were both entertaining and entertained!

It was a moment in time to simply pause and remember the beauty and hope of life as we hiked.  We took in the fresh air until it rained and the wind blew.  We even had a rainbow over the red cliffs as we drove away!

Although exhausted and having a few symptoms from the medication, he is dedicated to finishing strong in his school work for the first term.  He has been working on all the missed work every minute he feels up to it with encouragement that he is retaining the information and doing well on quizzes and tests!

We got a lab back today that one of the medications is at a dangerously high level and he is experiencing headaches and stomach pains as well as impacts on his kidneys.  We will watch and repeat labs.  As for now, the dosage has been altered once again and we will wait and see!  He smiles and the effects of the meds are lightened when he hears that he gets a break from going in today!

Be grateful for the tiny details of your life

and make room for the unexpected and beautiful things.

Snow fight at the top of Kolob Canyon

Cove Fort

 

As we walked through the snow and bitter cold to tour the fort
and hear of the stories, we were so grateful for our warm car to
get into and a warm comfy house to sleep in that night!

Happy Thanksgiving week everyone 

November 2012 - My Life Sounds Like This! - DONE

November 2012

Davis and I took a 4 mile walk today.  As his oxygen level stayed well below normal, however, well above where he had been surviving on the past few months, he thought he was up to my workout...I have to say he kept up pretty good, but I had him in the home stretch!  I hope not for long!   I hope he is leaving me behind again soon and looking back at me with that "I've have ya beat grin!"  As we walked, we talked over the amount of work to be down to receive passing grades for the first term of junior year.  A bit overwhelming to basically start and complete an entire terms worth of class work in 2 weeks.  The past four or five days, he is beginning to feel like he is retaining the information once again.  Unfortunately, due to the amount of drugs and such with the serum sickness, he lost most of what he had already done at the first of the term and is having to repeat it all.

I have been so proud of the work that he is still producing after hours and hours of study, reviewing and working.  If it is sunny, clear and warm enough he steals away a few moments in the sun to study and soak in the much missed Vitamin D.  This week alone he has redone 6 pre-calculus assignments, a quiz(100%) and a test( 96%)  History assignments and tests are on the table now, seminary reading and assignments are waiting.  He wrote as English paper entitled "My Life Sounds Like This"  The assignment was to choose music and lyrics that describe a part of your life.  I loved watching him create this assignment and his theme of endurance and optimism through music is awe inspiring.                                                              
                                                                                                                                                   Davis Cox

Period 8

My Life Sounds Like This

            Songs and their lyrics seem to have represented an all-encompassing theme in my life for the past 2 years. Themes such as hope, strength, and endurance. Being diagnosed with a rare and random disease can definitely alter who you are, but I have made it a goal to not let it define me in a negative way but to push me towards my potential. The songs I chose are important to me because they give me feelings of hope and courage when I listen to them. Some remind me of experiences I have made it through while others push and motivate me to conquer what is yet to come.

            In late July of this year, I began having to make many drives to the hospital. One of the really popular songs at the time was “Stronger” by Kelly Clarkson. It was eerie that nearly every single trip, my mom and I heard this song on the radio as we drove to and from the hospital. After a while, we decided to adopt it as our hospital theme song and would turn it up and sing out loud every time it would come on. The lyrics “what doesn’t kill you makes you stronger, stand a little taller” just seemed to capture my situation so perfectly. Singing them out loud gives me the energy to stand up and not be so depressed about the situation and just keep moving forward.

            Sometimes music affects me when I don’t really expect it to, like on the radio. Other times, I go looking for it to get pumped up or just to get my mind off things. One of the songs that pulls me up when I’m down is “Move Along” by The All-American Rejects. It tells me “even when your hope is gone, move along just to make it through”. It’s kind of a tough-love saying that hits me as sometimes we just have no other choice but to move on, but we do have a choice of attitude.

            My mom has many songs and quotes that she has about our life and our attitudes. One of her favorites that she applies to a lot of aspects of living has taught me many things throughout my life. The song is “I Hope You Dance” by Lee Ann Womack, and whether it’s “I hope you still feel small when you walk beside the ocean”, teaching us to be humble, or “Never settle for the path of least resistance”, there are many life lessons to be learned from this song. My favorite message from this song is definitely the chorus: “And when you get the choice to sit it out or dance, I hope you dance”. It gives me the inspiration that sometimes we can just let things go, dance and have fun instead of just sitting and feeling bad for all the things that go wrong. We can choose to engage in our life and participate rather than simply let it go by.

            In my 16 years of life, I haven’t had any major girlfriends or hard breakups, but at times I find myself comparing love songs to other areas of my life that I love, like sports. Without sports I don’t know what I would do with my life. They give me motivation and determination to push myself physically and mentally in ways that I wouldn’t without them.  In “I Won’t Give Up” by Jason Mraz, the words “I won’t give up on us, even if the skies get rough” give me motivation to get back in shape and stay focused on the things I CAN do instead of the things I can’t. When I am healthy enough to play sports again, this will help me prepare to reach for my full potential.

            I have always enjoyed listening to music, I took piano lessons when I was little, but it was when I started playing guitar that I really started loving it. One of the first songs I learned, “Home” by Chris Daughtry, has stayed one of my favorites to play especially through tough times. “Well, I'm going home, back to the place where I belong, and where your love has always been enough for me” gives me comfort, no matter what happens in life. I’m grateful that I have a home to go back to and people who love me when the world lets me down.  Above one of our doors as you enter my house, a saying reads Take a deep breath, you’re home!  Being home has many different meanings for me at this time in my life.  I am daily wishing I didn’t have to be home quite so much throughout this illness.  Due to decreased immunity, I have had many restrictions placed on me about being in school or too many public places.  On the other hand when I am freed from the confinements of the hospital, home is the only place I want to be.

            At the end of the day, Celine Dion’s “A New Day Has Come” seems to pull everything together perfectly for me. The lyrics “Through the darkness and good times, I knew I'd make it through” gives me the assurance that I’ve made it through today and confidence that tomorrow is a new day. This song is on a play list that I listen to each night when I go to sleep. It has become a habit and part of my routine that brings comfort to me. The many emotions music creates have shown me just how much songs and their lyrics shape the way I think and feel. It brings out emotions and memories that I may not even recognize consciously, but that deep down affect my thoughts and actions. Whether good times or bad, I am always conscious of choosing good positive music to inspire my life.

Today he emerged from a class project with a smile of satisfaction on his face that I haven't seen for some time now.  He had created his Pyramid of Success (included) I was struck once again by the maturity that can only be gleamed by being in the refiners fire at such a young age.

D.Cox-Sports Psychology
Success is the feeling of accomplishment when you have
done everything you possibly can to be the greatest you can possibly be.
No Regrets.

.