Thumbs-up!

It seems as if we have indeed been in a long waiting place and I am now emerging to write. I was halfway "waiting" for different news, "waiting" to gather my thoughts, the facts and other info to share in a constructive manner...just waiting! Well, I decided I just might be waiting for a long time unless I attempted to write about all the recent happenings.

It is often difficult to explain the nature of this disease. We have decided to continue to find hope in the uncertainty that will for certain be a part of our lives for a long time. The very nature of the beast of the unknown can wear on anyone. We talk of how to cope with such a beast and have come to the conclusion that it's okay to take a moment here and there to grieve the life as we once knew it, and daily choose to see the hope that uncertainty can offer. We painfully know where we have been and hope to learn and grow from such adventuresome experiences.

People are constantly asking me if Davis has always shown such strength and optimism.  He has an unwavering belief in the good.  I have looked back over the years quite intently the past four months and have noticed the answer exhibited throughout his life. Always saving the last bite of anything good for dad, providing both examples of peacemaker and troublemaker..always knowing when it had gone too far and offering a sincere apology and of course setting the tone of gentle goodness for the other boys to follow...AND More often than not a TWO-THUMBS-UP attitude! Even shown as young as two and a half when yet another challenge with a virus settled in his brain stem and caused balance and other health issues, for five intense and tender months.

Ryan found this photo of Davis and has it by his beside
"for the times Davis is in the hospital and not here."

In the current trials, Davis often adds a little color to this favorite response as he expresses this attitude with one thumb-up and one side-ways!
Over the holiday weekend, we had several medication changes, with mixed reviews. The hope for the immunity to hold it's own without the aid of medication was not to be right now. His levels dropped after only a few days and they had to put him back on the medication. We are going to try the weaning option now instead of just stopping all together. A good plan. The great news within that adventure is that without the extra effects of this medication, he was able to have a reprieve from some of the stomach pain. This, combined with the energy from the last transfusion hanging on, allowed Davis to go swimming in a private pool where he "cautiously" unleashed some of that brotherly teasing he is famous for providing. It was priceless to see him enjoying and as we would exchange mother-son glances and almost wishfully "forgetting" for a moment or two!

He was so energized with the success of the taunting and he continued it today by taping Ryan and Ben closed in a box. This was followed by one of those sincere apologies previously mentioned due to the exhibited freakish phobia of dark tight spaces! The exhaustion of the weekend activities set in, as well as, the added medication stomach aches and tonight has been a bit more mellow.

Labs are holding and still pending for this week. Every day that we can spend doing resumes for college, preparing for school, laundry, summer food and family fun together at home is a Two-thumbs-up day!

"The Waiting Place"

Someone dear sent us the Webster dictionary definition for the word WAIT.

WAIT-To remain stationary in readiness or expectation, or to look forward expectantly.

Also brought to my attention is the book by Dr. Seuss, "Oh, the Places You'll Go! Within the journey of places to go, is a somewhere called "The Waiting Place." It is referred to as a useless place where people wait for anything from

"the phone to ring or the snow to snow,

waiting for a Yes or No

or waiting for their hair to grow.

Everyone is just waiting."

The past few days, I have been pondering the idea of waiting and feeling like

we are neck deep in "The Waiting Place."

We wait for symptoms to appear, and lab results to determine the action clear?
We wait for the blood to give renewed strength and color to his skin,
Then as quick as it came, the energy and healthy hue leave again.
We wait for the hours to pass between meds,
And try to get sleep for our tired achy heads.
We wait at the clinics and offices galore.
We wait for the time for this experience to be here no more.

I wonder the need for all the waiting and realize, this time called life,

requires of us a great amount of waiting.

True the waiting game is a part of our daily lives, however, a challenge is issued to "live" within this waiting phase and NOT remain stationary. I liked that also contained in the Webster's definition, it stated the words readiness or expecting. There have been several moments within the waiting that I know we would have not emerged from, if not for the expecting, anticipation or hope of a different place.

It is increasingly easy to remain stationary in times of adversity,

especially emotionally.

It seems beyond overwhelming to think about the next place,

what if it is more difficult than the last?

I recently read a tender story of a boy paralysed by a shooting accident. He is an inspiration of "living" while in the duration of his Earthly probation. He could have chosen to wait to walk again, however, instead he has lived and thrived in a way that exceeds mortal understanding.

I recall the many phases of life, especially waiting and watching children grow. Can't wait for them to walk or talk or potty train. Going to school and loosing a first tooth are on the top of the list. Can't wait for that first house or car..can't wait until they are paid off. Can't wait for a vacation, can't wait to get home!
In all the waiting, my goal is to not only live, but find true contentment in entrusting myself within God's care, throughout the different waiting phases.

"Contentment comes from being satisfied with the things which the Lord hath allotted unto me. ..an assurance that your life is acceptable to the Lord and in accordance with His will, and that He approves of your efforts and the course your are pursuing, notwithstanding your weakness. I have also learned that contentment is not complacency, mediocrity, smugness, or settling for something less. President Gordon B. Hinckley said, 'Do the best you can'." (Maria Covey Cole)
In all the waiting, my goal is to not only live, but find true contentment in entrusting myself within God's care, throughout the different waiting phases. I crave the peace and calm that the very nature of the word contentment offers to my life.

schedule schmedule!

We took a small unscheduled jaunt to PCMC today to x-ray Davis' central line to make sure it did not have any cracks. The port had been giving us trouble all week and causing pain, so they decided to check it out. Although all symptoms pointed to a crack and another surgery to remove and replace the central line, fortunately, the dye flowed clear and the line looked intact. So we will not be going tomorrow for surgery, however, will go for platelets for the day.

We will then once again follow up on Thursday with a "scheduled" appointment and readjust medications.

Until tomorrow!

Beat it or be beaten

Every once in a while in adversity sometimes we think we don't have choices. Right now I feel like a lot of my choices are being made for me. I know that ultimately... yes mom, sometimes I can use big words... that everyday I have to make the choice to try and beat this, or be beaten. A lot of the time when I'm having the symptoms, the pain, the headaches, the stomache aches, the reactions, or even just think about all that I'm going through, I just feel like curling up into a ball. But I have learned that does me no good.

When I walk down the halls at Primary Childrens I see little kids who have gone through more than I have. I see people who are in a worse condition than I am. I feel bad for myself when I think about the sports that I'm missing out on, the things that I could be doing, not being with my friends. But then I see people who have never had the chance to do any of those things, play sports, be with friends, all the things i used to just take for granted and not even think about. It humbles me and makes me realize that no matter how bad I feel, how bad I"m doing, that there is always going to be someone doing better than me, and there is always going to be someone that is doing worse.

I have learned that we can't let the things that we can't change affect how we deal with things. This disease is obviously going to change my life whether I like it or not. I need to make the best of it and do as much as I can to enjoy myself and not let it slow me down.. too much. I have found that the best way to not have as much pain when you are in pain.. is to not think about it. The best way to not throw up when you have a horrible stomache ache, is to not think that you're going to. The best way to not feel like curling up into a ball and doing nothing and something that just helps me through everything.. is to not feel bad for myself and be grateful for what I do have and can do.

Love, Davis

The ultimate loogie!

This is Davis again...

Today we went to see the ENT to check and make sure all the fungus was out of my sinuses. He numbed my nose and went in with a long skinny tube camera and said there was a "little" crusting that he needed to remove. He came in with the the tweezers and started to pull. It felt like he was pulling out my brain... and after I saw what came out I thought he had. It was a blood clot from my sinus surgeries, mixed with snot and sinus tissue. Mom and I agreed that the length and width of it was about the same size as a stack of 10 quarters! I don't know how he got something that big out of my nostril, or how it even fit in my nose in the first place, but I sure can breath a lot easier and quieter now! Before I had been keeping myself up with this annoying whistling sound that it made, now I can finally sleep!

TTFN,
Davis

What did you do on your summer vacation?

Nothing says summer vacation when you are 14, like a two-hour wait to visit the ENT, while nauseated and in pain, to have a half-golf ball sized mass of tissue, blood and other unmentionables extracted from your nose, and then a quick swerve off the highway on the "road trip" home to throw up in a Kleenex box, with the contents of the box flying in haste to make it available for the "upheaval!" All this, expected to be followed by a little frustration...but no, not from this boy, just a wipe of the brow and the face, from a conveniently scattered piece of tissue, and a huge sigh. When asked if he is okay(which in reflection is one of the worst questions ever constructed in the English language), his nature is to say Yes, I'm good...then at this moment follows with, "I'm not sure if I remember what okay feels like."

We are headed in first thing tomorrow morning for a round of blood and platelets and hope to only have a daytime experience. Davis continues in true calm stride with all the bad and all the good news. The ENT was very pleased with the recovery that the nasal tissue is making after the surgeries. We love when the residents walk in announcing they were told to come in and visit with us because we are "interesting!" I question whether that it is meant as a compliment?  They will follow up in a month to make sure we continue on a healthy pathway.

After a two hour long conversation and a total of 6 hours on the phone with insurance, clinics and pharmacies, we have a different medication routine and will keep you posted on the happenings with his responses.  Not to offend, but one just has to love the twisted system. I have a new full-time job to coordinate the mass of papers and claims. There just has to be a better way! Emmi made a comment that I was so lucky as I pulled out 12 "letters" from the mailbox in one day for me to open. She wishes that many people would write to her! The desire to be 5 once again flooded my heart.

PS. We thought it best to omit any photos from todays adventures,

for those with weaker stomachs! We figured the visual imagery

of the description would be enough! Plus, the ENT specialist

questioned our intentions when we asked to take the speciman home!

Thursday, Friday, Saturday, Sunday!

What a great couple of days to see Davis out on the town! First the movies with family and then a Blaze game to watch Ryan in the half-time game. He has been recovering today from the adventures.

We realized that the mind was a little more willing than the body. He still holds true that the outings were worth the headaches and swollen feet complete with sausage toes, however, has taken it easy today, playing guitar, games, and sitting in the massage chair!  We are hoping he feels up to sacrament meeting tomorrow and that will be a dream.

SUNDAY-
I had to remember the wish I had expressed to get everyone to church amidst the true-to-form chaos of the morning. The ultimate dream of all seven was altered as Courtney reminded us that she was off to yet another missionary farewell, which was good for her. As I think of the meeting without her, a flush of what is to come came over me.

Tangent:  As we prepare to send Courtney to UVU this fall and Emmi to first grade, and three boys in the middle...our family life as we know it is changing. All good changes for the most part. I have moments of wishing for the yesterday of semi-controlled bedtimes and Friday night home movie nights entertaining all ages. As parents you dream of raising self-sufficient children that can move away and be successful, it just came so very fast.

We discovered that in the several months that Davis had not attended church, he had grown out of his pants and shirt. Not discovering the need for size appropriate clothing until 10 p.m. of course meant no shopping. Davis fought the waves of nausea to get moving and made it to a little bit of sacrament meeting before the nausea won out. Maybe the size 32 pants he was squished into just to make it to the meeting played a slight roll?

It was tender to sit and have the sacrament at church together.  Once again a routine activity, always reverenced, however, now truly cherished.

Off to the movies!!!

Good news flash of the day!

The medication that Davis has been taking to increase his immunity provided him with a high enough count today to go to the movies!! Still under precautions for other low numbers...we were encouraged to enjoy today...and oh, will we! Within seconds of the news our list of desired activities began to develop. It is amazing what the anticipation of something ...anything, fun or different can do to boost the spirit.

Ahh, a good lab result!

Davis and I let out a heard-down-the-hallway scream...okay I screamed, but if his grin was audible it would have rocked the building!

We met up with our friends, the Knights as Carson and Davis bond over the anticipation of CT scans and check-ups from the same clinic.(We are happy to hear that Carson's news continues to be good.)

We will enjoy today and hold onto the encouragement that the drug therapy will continue to increase his immunity numbers. The ultimate hope is still that someday his body will be able to create healthy blood cells without the aid of medication. They have made some adjustments to the meds today and we will retest again next week to determine our direction.

We do not remember days, we remember moments!

This day...this moment!

From morning to night!

Just as Davis' symptoms increased through the day, the lab results came back. With a low hematocrit comes an intense headache with nausea. Although platelets were extremely low today, luckily Davis only had minor petechiae and escaped the mouth or nosebleeds. We headed to the hospital for a short stay admission, platelets and blood. I have to confess, I got a little too comfortable at home over the past week and the admission although expected, was difficult. The hugs as we leave are getting longer and tighter, with the unknown length of time before we return. Emmi has adopted the non-committal lingo and states with a questioning tone, " I will maybe see you tomorrow right?" I really need to learn to take advantage of the sleep while home.

Relax, Reflect, Restore!

I enjoyed the holiday weekend with all the mom moments that are now flooding my heart on a daily basis. I find myself taking even more than the usual photos and video of every little moment...impossible you say...you know me...I LOVE PHOTOS MEMORIES!

I still like to feel that I would be able to have the gratitude without these intense trials, however, I am reminded yet again that I am not in charge. Over the years and after each round of adversity, I reconnect with the need to slow down and cherish the simplicity of life. I have hopes that it is not a function of my inability to grasp the concept rather it is all part of this period of time we call life.

Wednesday is full of promise as we hope to leave our short day stay around 3 am... prayers said...fingers and toes are crossed!

Well 3 am came and went and Davis required a night of oxygen before heading home around nine. Good to be home.

Welcome Tuesday morning

A Tuesday morning has never looked so bright. I woke up almost in disbelief after a restless night to a peaceful boy sleeping. Davis has made it through the entire holiday weekend at home. Labs drawn..results will determine the day.  As we get to the end of each day and enter the night, I check and recheck that no complications are creeping in on us. Each day was filled with amazing highs and a few lows. He battled through the headaches and stomach issues to participate in as much "outside" happiness as possible. Our spirits are always lifted to spend time with friends and family. He did not have enough energy on Saturday morning to join on the float for the entire parade, however, met the officers and student body on the road for a quick photo and hello.

It was touching to sit at the parade and see the VW cars with the announcements of the benefit for Davis on their windows and sides. Special thanks to all those that have a hand in the planning.  The excitement and love is contagious and offers hope. We are in awe and so amazed by the caring community in which we live.

The encouraging words as everyone saw that he was out and about brought that familiar Davis grin. 

He was able to see the parade from the car and the fireworks from the park.  Davis' mouth even felt good enough to enjoy the fourth of July food favorites and challenge Courtney to a contest to tie a cherry stem in a knot with his tongue!  The victory being even sweeter knowing that as the meds are changed, his mouth will, once again, eventually lose such a talent.  He gloated as he knotted stem after stem stopping at an all-time personal high of seven.

LET FREEDOM RING!

Every single day during trials is celebrated with a little more thought and gratitude. We are grateful that we have been home all week. With the results of some labs going up and some continuing to fall, our anticipation of making it through the weekend grows. On any given day you can find each one of us playing a huge part in caring for our Davis. I am the chief scheduler of course, however, have now trained Jeff and Courtney in shot giving 101. They were both naturals and Davis put them at ease as the patient. Courtney did a great job and will now be able to volunteer in her first nursing class this fall with some experience under her belt.

Emily is the first to want to participate and help. She is intrigued at the whole process and has wanted to be a nurse for a few years now. I wondered if these experiences would alter that dream, however, she is more determined than ever to grow up to be a nurse and "take care of Davis if he is still sick!" Ryan could go either way. The interest is there, until his stomach takes a turn, followed by a need to sit down. Ben loves the equipment, however, is well aware of his limits and is found sprinting for the door with the mention of any needles or blood. Emily often follows to console Ben, telling him "don't worry, I will take care of you!" In the beginning, he tried to remain in the room and be tough, however, after the gaging and sweating began, he realized he was going to have to give up a little toughness. Those of you that know this rough and tumble..highly opinionated, thick calved, broad shouldered boy, can only imagine the tenderness as he gives into letting Emmi take care of him, and embraces his inner wimp!

Davis has hopes that he will feel up to participating in the Fourth of July parade on Saturday. The KJH officers were trying to get a truck to see if he could sit in the back. He had fun being involved in an outside planning meeting with officers this past week and hopes to be involved as much as possible.

Happy Independence Day!