Small packages...BIG hearts!

The constant out pouring of love, emotion and concern from all the little ones and teenagers is a rainbow in this storm. I am in awe at the innocent sacrifices made on Davis' behalf...our whole family for that matter. Parents call and express the true desire of the prayers of friends and even kids who barely know Davis, but have watched him be an example of true strength and determination.

I stand by in wonder, as I try to absorb the overwhelming interest and love for this boy. Not knowing all the reasons for our particular struggle to be so public, I am at peace that it is even larger than Davis and pray that you will all be forever altered to living a life full of faith, promise and enduring hope.

We love you all...BIG and small.

A matter of perspective!

I have found myself in several moments in the past few months in thoughts of perspective. From the mundane to the eternal, life has forever been altered. Twelve weeks ago a day of platelet transfusions, labs and changing of medicine schedules and dosages would have been to say the least a challenge. Today the 8 hour venture seemed like a breeze compared to the life-threatening events of the past three weeks. I reflect every day the blessings that we have received and the prayers that were heard in the early catching of the fungal infection. Looking back, I am so grateful that I was sustained from dwelling on the realization that that might have been it and had the ability to hold onto the peace of a blessing. My heart and my mind will wander for a moment and I have to reign in the massive flow of thoughts that flood your very being and make it difficult to breath. I have had a silent peace within my core as the pounding of my heart and the warm flush in the back of my neck rises to my head and my stomach turns with the uncertainty of this life.


Once again it is amazing that from an outward appearance, Davis continues to show little signs of the battle raging within his body. He sits as friends and neighbors swarm at the sight of him outside to talk and sit...and expect him to look sick.

His gentle strength is contagious as he sits weakened in the flesh

and yet never stronger in spirit.

He did wake Monday morning with petechaie in his mouth and all over his legs. His headache was lessened by the medicine and labs were drawn. Platelets once again reached a low 3,000 and we headed to PCMC for a transfusion. Being ...confident, okay hopeful, that we were not staying, we packed lightly. The pre-medication was given and no reaction to the platelets today. It's a good day.


A few labs have been showing some effort on his body to respond to the treatment. The labs seem to go up in attempt to offer hope, however, revert back and forth. I feel like this is one of the constant test of the adversary. We begin to feel the storm relax and then another often stronger begins to blow. More than ever, I try to remember the promises made through faith.

In Davis' own words "this may not be what we think it will be, but we should hang on."

Being in the early stages, even with the increase in some blood cells, his road ahead is still a long one. Some of the medications he is currently on are said to potentially remain with him for a year or more. I met a family that had a family bone marrow match and were in the stages of recovery. As we shared stories, neither one of us could believe what each had been through nor wanted to trade. The hope remains that somehow the road will be shorter than longer and with less obstacles. The stories and experiences that surround, reaffirm my constant feeling of one of my favorite quotes:

"There isn't anyone you can't love once you know their story."

A Heart Like His

Here's to listening to a story and finding someone new to love.

Hey there from Davis!

My mom is having me write this post to have something to do and to "express my emotions"... ...so here it goes.

First of all I am so happy to be home from the hospital. The past few weeks have been hard with all the surgeries and being in the hospital for two weeks with no break, but I am glad I've made it through it all. After being there, I love being able to be home, relax and just be with my family. I am especially glad it's sunny outside now!

Yesterday I felt okay to go watch my baseball team's game. It felt so good to get out and walk in the fresh air. Watching the game really made me want to get out there and play and I can't wait until I can again! I thought the team shirts were really cool. My whole team had my name and number on their sleeve to remember me. It was great to stand in the circle and cheer. They also gave me a shirt with my name and number on it, and my mom took a ton of pictures. We all went and got slurpees after and it was fun just to talk to everyone and be around my friends again. Thanks guys, YOU ROCK!


I would also like to thank the neighborhood kids who have had the lemonade stands and brownie sales and gave your hard earned money to me. It really means a lot to me to know that I am being thought of by everyone. YOU LITTLE KIDS ROCK TOO!

Hugs all around!

We were able to whittle Davis' medicine routine down to 2 IV's, 1 shot, and 9 oral medications, and nasal irrigation and come home for a break. After receiving approval, blessing and a few cheers, from each specialist..including, Hematology/Oncology, General Surgery, Infectious Disease, Ear Nose and Throat, Social Work, Bone Marrow, Ophthalmology, the hospital Chaplain, nurses, Home Health, Discharge Planning, and one last pending lab, we walked out into the sunshine.

Even under the mask, you can see the relief and happiness in his eyes as he breathes in the fresh air and anticipates home.

Before we left, we were able to have a fun and encouraging visit from a great friend and two BYU football players. Riley Nelson and Bryan Kariya took time out from their day off to stop, chat and sign a shirt. Davis had a great time talking and laughing as stories were exchanged.
No he hasn't gone BLUE, however, would definitely cheer for these players...as long as they weren't playing the UTES! They understood and gave him a Y shirt to sport anyway. They were great sports and the anticipation of their visit filled Davis with energy...THANKS JOEL!

Good weather, good friends cheering as we drive through the neighborhood, a hot shower with therapeutic pressure, a fresh clean house(THANKS ANGELS), 15 minutes in the massage chair and hugs all around...What could be better for today?

Expired milk, the mirror and chocolate!

Random reflections-June 2010-lost entry!

Each day goes by in such an out-of-norm fashion. The nights alert the lights, beeping and reactions. The days are spent sporadically trying to recover from the nights. Upon admission, I happened to glance at the expiration date of the milk cartons in the cafe ...thinking optimistically that we would be long gone before that date arrived! That date has come and gone. New stock of milk placed in the case with a new expiration date. Day by day.


Within the 12x12 room is an obnoxious 2x3 mirror. No matter where you are in the room, this mirror attracts your reflection, drawing you in to view yourself in the harsh hospital lighting. Interestingly enough, I now fall into several risk categories for aging quicker!! My increased awareness of the need to stay on top of the aging process as I turned 40 this year was short lived. My new found sedentary lifestyle, at first might seem like a relaxing break from a fast-paced life...not so...after 96 days. These days only broken by the occasional jog up the stairs, or leg lifts while waiting for the microwave to beep.

The lack of Vitamin D adds to a decreased energy level, as well as, a just below healthy glow!

I catch myself with a curious awareness of the deepening furrow in my brow. No matter how tight I pull back the ponytail, it now remains a less than inviting crevasse. I used to think that people with this issue just must be cranky, now I give them empathy for perhaps a difficult life experience.

Davis and I were trying to decide if we would be permanent GERM-FREAKS when this is over or we will celebrate by rolling in the mud...To this we say...bring on the mud!

Social isolation for my personality is taking it's toll. In one breath, I want to throw the biggest party ever...in the next...just the thought of it exhausts my energy.

I long to have a rushed Sunday morning trying to get everyone out the door and look down the row at my entire family together in church.

There is a need to try and balance fasting for strength, eating to stay healthy and avoid getting run down while accounting for the lack of activity and increased calorie intake. The emotional eating issue alive and well with the draw of an endless supply of chocolate eclairs and Nutty Guys (aka bag o' thunder thighs). 1 minute 30 seconds(microwave timed) leg lifts do not even put a dent in an entire bag of chocolate covered raisins consumed every three days! It is nice though, they don't weigh their chocolate, so they have no idea just how much you've consumed before you even reach the check-out!!!?!! I know, self-control huh?

The deep, way-too-long lasting sleep creases across ones face each morning are a true give away to your age and the nights accommodations. Again being greeted first thing by the mirror and then a gaggle of residents...Mirror mirror on the wall!

Life is fragile, handle with care

OXYGEN, PLATELETS and SURGERY#5

Taking a deep breath is such an automatic response, until you can't. I breathe with deeper awareness. Davis continued on oxygen all day yesterday and worked diligently on a breathing machine to help remove the fluid from his lungs. He needed platelets prior to going in for the 5th surgery. We were up and down all day with the breathing and platelets. The first bag caused a mild reaction and did not increase his counts enough, thus seemingly requiring a second bag of platelets. We began the pre-medication round again and then it was determined they would take the bag of platelets to the OR and hold them unless he bled large amounts and needed them. It is a balance between dangerous bleeding, giving too many transfusions and risking reactions and a decreased ability to accept a bone marrow transplant if needed in the future.

GOOD NEWS MINUTE!

The ENT specialist reported the happy news that he was confident that this time around he was able to remove all the infected tissue and bone. The news of the surgery went throughout the different specialists and they brought many smiles and words of relief for Davis.

FRIENDS, FOOD and FAMILY

I had such a great time last night taking photos of all those friends and family that made the trip to donate blood. My heart was filled with the comfort of all the children that will receive blood from such amazing people. Thank you for living lives that allow you to share such a gift. It was the most social interaction that I have had in months and I loved seeing so many familiar faces.

My heart was full of emotions and gratitude as I have never experienced before as the fragility of this life seemed to be held within each bag of blood. I couldn't help but have the overwhelming desire that my donation go directly into my boy and have some healing power. I hope that all the motherly love that I have for Davis will have similar intensity.

FORWARD WITH HOPE

We are continuing with the hope that the new medication we are giving to Davis will help his blood counts begin to rise. Stranger things have happened right. We are meeting with the Bone Marrow team today to get a consult, just in case, the timing will all be set in motion.

Of course, as we know everything can change, however, there is talk of letting us go home for a visit if we can remain fever free and stay off the oxygen. There are mixed emotions of going home. The emotional balance of healing is huge to have a break from the daily grind of the hospital..not to mention the healing power of sleep. However, being still at risk for infections, is always a concern. We are careful to not allow the uncertainty of this long road beat us down. So with that..we continue to live the moments of each day as they unfold.

all in 24 hours

Davis sailed through the two blood and one platelet transfusion on Saturday morning. He felt tired after and slept most of the day. Thinking that it was a settled moment, I headed home to gather supplies for everyone to return home from the week of vacationing with friends and family. Courtney and Ryan spent a few cold days in Yellowstone with friends experiencing the park in a snow storm and then good enough weather to ATV and canoe. Ben and Emmi on the other extreme spent a weekend swimming and hiking in the 100 degree heat of St. George.

Within moments of being home, I got a call saying that Davis experienced an acute attack and was having a difficult time getting air. This is a frightening experience for Davis and all involved. We made a nervous trek back to the hospital. He was found to have fluid in his lungs and they did a chest x-ray and he was put on oxygen by mask. Worry about the fungal infection or another infection within the lungs began to be talked about among the specialists. The night was full of everything but sleep or even rest. We are in the "newborn" sleep phase...nights are mixed up with the days, after so many days in a row the delirious exhaustion sets in and one must try to sleep when he sleeps. A second chest x-ray looked clear for extensive infection and the oxygen and medications are helping him breathe better.

Now 24 hours later, he continues to need oxygen on and off, however, made the determination to hopefully get the fluid from his lungs by pacing the room, putting a few balls on the portable golf green, and weight lifting 32 ounce Powerade 100 times.

It is amazing the energy that just this little amount of effort taxes this once powerful athletic body.

Kudos to Davis for his continued perseverence.

FATHER's DAY-2010

Father's Day consisted of our entire family gathering in the hospital to open cards with dad, have the sacrament together and eat, all before he had to hop on a plane for a four day business trip....the drudgery of life goes on. The uncertainty continues to surface in the other kids every now and again. I am so proud of my kids and grateful to family and friends for hanging in there.

I am so grateful for all the emails and stories of endurance through trials. I truly wish I could share the many inspired words sent our way. At times it is overwhelming to hear of all the struggles in the world. At moments of pure exhaustion, I have to try and hold tight to all I know to be true and good. My heart is full of intense love for each of you that struggle with open challenges and especially those in silent search for direction and peace.

You're Not Alone

This will date me, however, today I reflect back upon the words of a song when I was a teen...You're Not Alone...Even though right now you're on your own, you are loved in ways that can't be shown...You're not alone...you're prayers are always heard... You're not alone.

I remember being sustained by those words in what at that time in my life seemed so tragic. I giggle at the trials in life at that age, however, realize even those shaped the daughter of God I am today. I love the comfort of knowing I am never alone.

As I walk the halls to look out over the valley, tears fall, saddened for the physical struggle and then joyfully for the spiritual reassurace. It is awe inspiring how the latter seems to always out power the weak moments.

I pray for the day when I can look back upon this trial...and in gratitude say...we made it!

Urgent Blood Drive for PCMC

Primary Children's Medical Center ARUP issued a call for an urgent need for blood due to two patients using over 150 units of blood this week, thus depleting their storage.

We realize that this service will not necessarily directly affect Davis, however, as we sit tonight and await a second unit of blood for his transfusion, we appreciate the need. We hope you can join in the cause and pass this opportunity along to others.

Date:Monday June 21st(night drive) 9 pm to 1 am
Tuesday June 22nd(day drive) 7 am to 2 pm

Place: Primary Children's Medical Center 3rd floor
multi-purpose room

BRING: photo ID and be well hydrated.

Individuals under 18 CAN donate with a signed release.

For questions about whether or not you can donate call 801-584-5272 ext.4201 ask for a tech or come to the drive and be screened there.

For appointments call 801-662-6580

Walks-ins are always welcome

THANKS!

Strength in gentleness

Today has been a continuation of our current roller coaster ride. Davis has struggled through a day of stomach issues, headaches, restless leg, and nausea, and yet continues to hold strong. A good friend sent me a quote today that captures Davis' true essence.

"Nothing is so strong as gentleness and nothing

is so gentle as real strength."

We had the good news from the fourth surgery biopsy that there was no fungus to add to our strength. They will continue to monitor and do another surgery on Monday, however, the specialists used the word miraculous to describe the early findings, diagnosis and treatment. The extreme 3 day jaw pain , headache and fever which originally brought us to the hospital last week, suddenly retreated when we considered the direction of surgery to determine any infection. We truly feel blessed, and have continued hope that he can remain free of any other infection.

Last, but certainly not least. We are blessed to have so many loving and concerned friends and family. We were graced by the presence of a visit from Elder Kikuchi of the Seventy. Together with a good friend, Elder Kikuchi proceeded to give Davis a powerful priesthood blessing, full of hope and promise and comfort. It was a special experience that Davis will surely remember and I will always hold dear. Davis' strength and hope increased through the faith of Elder Kikuchi and we will cherish the memory forever.

If it isn't one thing....

If you ever wanted to know just what the phrase "been through the ringer" means, Davis could tell you. The past five days have been a never ending roller coaster ride, full of twits....oh oh typo...I meant twists, turns and a few upside down moments. We continue to run tests for one issue and find another. To simplify, I will try to bullet point the happenings.

Head to toe:

*Head CAT scan-shows inflammation in the sinus' question the spreading of the fungus infection, beyond sinus and into brain and eye orbits.

22 hours of pondering..

*Head MRI - shows no fungus has yet spread to the brain...momentary relief.

*After two days of issues with insurance..we received approval to see the closest retina specialists at the Moran. They are out of network just across the walkway, but since Davis cannot travel, we were allowed to have an appointment.

Retinal photos find the retinal bleed that is still impairing his line of vision will require surgery, however, cannot be done until he has some immunity and platelets...so that is on hold for now.

It appears that the eye orbit is FREE of fungus...momentary relief.

*His IV central line decides to go on strike for 30 minutes...
30 minutes to ponder another surgery to replace the line.

After a few silent and some not silent prayers, and the tip of his head to the far right... it begins to function for him...momentary relief.

*Abdominal / chest CAT scan looking for any spread of fungus into his lungs, finds minimal spots that they will watch, however, found the
calcification within is appendix...what in the world....

18 hours to ponder risks of leaving appendix in versus removal..

No immediate signs of inflammation...this surgery on hold.

*Waited through the break of no sinus surgery yesterday to see if the platelet count would hold out for a fourth surgery today, without
requiring a transfusion....platelets remained at a reasonable number ...currently in surgery. Biopsy results pending for tomorrow.

*Davis still continues to be blessed to tolerate the daily anesthesia well and the request for a banana cream pie was submitted prior to surgery.

*Pain is off and on being under control...new meds or changing the dosage causes unsettled feelings within.

*Energy level also reaching new highs and lows.

*The need to be NPO or nothing by mouth to eat, makes for a difficult eating schedule and lots of hunger pains.

There are a few other issues in the middle...happy to report that the nerve and ligament tenderness and pain in his legs and feet are less now, and his toes are perfect!

We are hoping to eat pie and sleep off the anesthesia and the past few days!

On rides of life like today, we can for certain call upon the safety of our love and faith. I truly cannot fathom this ride without the love, security and peace that is offered through our faith. It is the calm amidst any storm. I have felt a supporting hand as I have treaded water the past few months..often with only one nostril above the surface! The insecurities of emotional, financial and physical uncertainties continue to pile upon my back as I tread, requiring daily...if not hourly, moments to remember to stop thrashing and fighting and just relax and breathe.

BE STILL AND KNOW THAT I AM GOD.

Swim for the cure!

Written by Ryan; May 2010. Found as the boys cleaned out backpacks from the school year! I pray that Heavenly Father will hear the hope of a child.

A day in Davis' life

The struggles of the weekend are now making news all around the hospital.

So far today Davis has been seen by 6-7 different residents, 4 ENT specialists, 3 attendings, an eye specialist, 3 infectious disease doctors, and a few others along the way. It has been very discouraging to be known now as the "one" in whatever number, that gets it all. Davis has endured many side effects this weekend as we try desperately to fight this major fungal infection in his head. This is a great risk to Davis because his immune system is still at zero and his body is struggling to fight off the invaders.

The first two surgeries went as well as could be expected... with the lack of knowing what to expect being at the forefront. The problems of the past few weeks have now taken a back seat. The main focus right now is to get the infection under control with a few medications and daily surgical removal of the infected tissue. They flew in special equipment and specialists that allowed them to be as aggressive as possible and as careful as possible. Davis has been blessed to be able to handle the anesthesia well and the biggest complaint for a 14 year-old boy is not eating all day awaiting surgery and a scratchy throat afterwards.

He continues to show tremendous strength as the swirling of big words are discussed over and over. The biggest discouragement is whenever someone states that we will NOT see this or that side effect, or just how rare a certain reaction is and that is just what he experiences the next hour or day.

We are just headed back for today's surgery, followed by a CT scan of his body to determine any further spreading of the infection. We will see the eye specialist tomorrow to determine the issues as to why the vision in the right eye is still impaired.

As I feed, wash hair and care for this weakened physical body, I continue to take note of his inspiring inner spirit. Please fell free to send any uplifting words of encouragement that you have found in your trials in your lives. We have added photos and a few items from home to soften and lighten our new abode. Any friends that can text, email or Facebook would be a great source of emotional support to Davis. He has a few moments here and there where he feels good enough to chat and respond, and appreciates the distractions of normal conversations and happenings.

We again make the long hallway trip to the operating room, we decided that we will have to name this hallway after Davis for the frequency of use. I then walk the other hallway alone and decide this will be my hall. After the third day in a row of walking the hall, I realize my body is tensing from familiar uncertainty. The parent waiting room is full today, some will leave before me and others will remain long after.

This journey called life continues

.

A year-long week without end

Dearest family and friends,

This week has been one of great trials. Davis has been fighting fevers all week. Every night has been full of meds, frequent temperature checks, cold wash cloths and little sleep. Davis became more symptomatic on Thursday and labs indicated that he needed blood and platelets? We spent 12 long hours in the clinic receiving the transfusions and were very glad to go home on Thursday night. Unfortunately, Friday brought more intense fevers, jaw pain, headaches and an admission. The first test was a CT scan to help determine the potential causes for the pain and headaches. The report is that there is no bleeding, however, there are pockets of infection in his head. Davis received two more bags of blood and two bags of platelets, before heading to surgery to do a biopsy to determine what type of infection and how to best treat.

I have found that it does not matter if your baby is little or big, watching them be wheeled away for surgery in lists my most tender mother emotions. It also brings out the intense protective mother bear in me. It is such a test of faith to hand their care over to strangers. I pray once again as I walk the quiet halls to the waiting room, that he will be watched over with love.

The flurry of activity and constant discussion of serious infections swirl about. It is intriguing to me to ponder life amidst a crisis. Life continues to revolve at a quick pace all around. Every once in a while, a silent still comes over my being as if to calm the raging emotions of helplessness. In those moments, I find the deepest need to refrain from the "what ifs", whys and how's of this life.

The thoughts of my deepest hopes and dreams for a child being on indefinite hold, at some moments frighten me. Often feelings of the unknown being far more challenging than the known. The ability to hope in crisis mode is exacerbated by the pressure to hold onto every hug, every kiss, every memory...every moment, just a bit tighter. The younger kids question "when will Davis' sickness go away," grasping for some semblance of normalcy. We have been so blessed with family and friends that continue to provide opportunities like miniature golf, Boondocks, play dates, eat-overs and late nights. The anticipation of an adventure always lifts their spirits from the monotony of this illness.

An inspired friend reminds me that we can find joy in our journey through this life, despite obstacles and severe earthy trials.

I have found that one method of finding joy in the moments is to not look too far to the future that you miss the present.

Sunday morning brings another round of platelets and a second surgery. His tender heart is worn a bit and we pray continuously. We will keep you posted. Thank you for the ever loving concern, support and prayers.

Let the summer games begin!

We made it through the first few days of summer with a silver medal. Our new found house routines are constantly needing alterations. Besides the endless laundry, and door knobs to be wiped daily, we altered the job chart to accommodate our new needs. Everyone was quite agreeable to trade Davis for garbage duty and dirty dishes. He was voted in as the official "clean dishwasher un-loader" and "clean towel folder"when he feels up to it! We currently have signs (provided by Ben and Emmi) all over the house, reminding us to wash our hands, turn out the lights and a Davis' bathroom ONLY! Ironically, they turned on all the lights around the house to place the signs to save energy and then proceeded to leave a well lit incriminating path behind them!

A day without Laughter is a day lost!

Weekend Warrior!

Davis had the best of times and some not-so-good times over the weekend. He held strong through a slight yet annoying fever and we made it through the weekend without a hospital visit, due to being home on IV antibiotics. We celebrated Courtney all weekend with graduation then a birthday day, followed by a fun family party on Sunday. Thank you to all who made this special weekend happen. We continue to be ever so grateful for the outpouring of support, both known and anonymous.

My emotions are so tender and raw and at the mention of...well anything sentimental... like one daughter leaving for college and on the other end, another headed for first grade, I tear up, spill over, and then eat. "Hello, my name is Gayle and I AM an emotional eater!" It really matters not the emotion...stress, happy celebration, sad expressions or boredom(well, that's a far stretch right now, however, if given the opportunity, I would comply). The mere mention of his baseball team adding Davis' #9 to all their shirts to honor him touches my heart.

It makes you realize how healing the thought is that you are not forgotten.

As for this warrior of mine, it astounds me on a daily basis the ability of this young boy to overcome set backs.

He is a man of few words...except for when he is on a roll and
then there is no stopping the contagious nature of

his grin and belly laugh.

The ongoing project of transferring our family videos to DVD is a true source of a lot of my emotional eating moments. My intense awareness of how quickly time passes, often stops me in a flash to just sit and ponder in awe. The amazing images of my children as they grow seem to transport me back in time, as if it were yesterday.

Our family began in 1990 and I am now recorded up to 1998....267 tapes to go!! The most recent memories brought back to life, are my precious Davis turning three. His slightly curly hair, staccato voice, and calm yet mischievous mannerism were a daily comic relief to all. From the very beginning, he was notorious for his tender personality that was observant of others needs. He would save the last bite of every treat for dad to eat upon returning from work. He would lean in and kiss at a moments notice. His big sister as usual is always there to comfort, color with and of course mother at times. Courtney was and continues to be a shining example of strength in trials to Davis.

We fought through challenging times to bring all of our children into this world. I have always cherished the confidence that Heavenly Father had in me to grant my hearts desires of these five babies. I cherish the moments more and more as I deeply understand that they are merely on loan to me in this life. Every aspect of who I am, is defined within my ability to be a wife and a mother. My hopes and fears are all for my children. I truly appreciate the scripture that states; I have no greater joy than to hear that my children walk in truth. (3 John 4)

As we now approach the event of our first child leaving the home and with that the altering of our family as we know it, I tremble in prayer that I have given the security from an earthly mother and the confidence of the love of a Heavenly Father needed to brave this world.

Referring back to the food issues and because this post appears a bit deep, I know I have done my best to physically feed my children and really anyone that visits my home. I love to feed people! I feel that as I age, I am in more constant need for spiritual nourishment. I try to absorb all that I can, however, often feel I am not fully comprehending. I am in awe at the strength found within this community around us. Numerous individuals have approached with words(and treats) of comfort and understanding of the true meaning of enduring well. I find a new sense of wonder at the happiness that still exists in this world despite satan's relentless attempts to destroy.

I am fully aware of the struggles that are abundantly around us every day. I know that ours right now is out in the open, and with that brings an array of emotions. I hope to send love out to all of you that are silently struggling...the Lord knows who you are and will give you the peace, if only for moments hear and there. Hold tight to those moments and your babies.

"The best day in two weeks!"

Once again the day is ending with a slight rise in temperature. Bags are packed and ready to go. Davis' temperature continues to rise. The physician on call says he is on the right antibiotic and if he is not otherwise symptomatic, we will watch. Thus I write this 12:35am post to stay awake to monitor temps. It's a weird phenomenon. I'm too exhausted to sleep.

Earlier today Davis was feeling good enough to go to Ryan's ballgame and get some fresh air. We took meds to carefully complete while out and about. As we get out of the car, he forgets for a second to put on the mask and states; "maybe I feel too good today!" It was great to see him enjoy the day.

When the fever first began at about 9:45 pm, I had a few sad moments as I watched him quietly and emotionally gear up to return to the hospital. Overwhelmed, I said a tearful prayer and immediatly felt peace. I contribute this to the tender fast on behalf of Davis this weekend. We are truly grateful for the support and love.

Gotta go for now...

Just another day in paradise!

As every mom knows, it is often difficult to spread yourself among so many different roles...all of which seem to be full-time...no regular break-time and often requires overtime hours. Today was such a day and my thoughts are a bit scattered and random. It is now 1:45 am and I need to stay awake to take Davis' temperature regularly for the next hour... so I sit to write.

Nothing is worth more than this day!

This day began 6 am Friday
*It is amazing what five straight hours of sleep in your own bed will do for your skin. I hit the pillow at 1am and there I remained, same position all 5 hours. I positivly woke up glowing?
*medication routine starts at 6am. One IV med to be infused over 5 minutes and the other over 90 minutes. I decide if I lie back down, there is a good possibility that I will not wake to finish the infusion.
So I start the to do list of the day.

*The kitchen table looks like a pharmacy. I look forward to the day when we can have a family meal around the table. Soon.
* I look forward to the day when we can hold hands for our family prayers. Due to the obvious risk for spreading germs, we now fold our arms and do a lot less hugging. Emmi has created and mastered the AIR HUG...This is done when one person is clean and one person has not yet decontaminated. She holds out her arms and pats the air towards you as if it were a hug.
* I look forward to regular hugs again.
*laundry started
*Graduation gown 1/2 ironed, clothes set out. Tassel? check. cap? check. tickets? check.
*clothes folded, dishwasher unloaded.
*Teachers gifts for the last day of school, wrapped.
*treats for after school parties set out.
*Phone calls to the lab. Results still pending
*Kids awake to catch the bus.
*last minute request for home lunch fulfilled.
****Best part of the morning so far...Pancakes made for breakfast, a "thank you mom, this is 500 times better than cereal." ( I think this would be interpreted as, mom we really missed you this week!)
*flowers for graduation ordered and being picked up. Thanks mom.
*Blinds open, what a beautiful day.

* I look out the window and reflect on a moment from the night before. Ben wanted to tell Davis that he had missed him the past four days and was glad that he was back. Being extra tender these days, every time he tried to approach Davis, his eyes would well up and he would back away. After four attempts, we walked over to Davis. As the words came out, the tender tears came. He wanted so badly to continue to appear tough, that as he wiped the abundance of tears from his eyes, he began to laugh, cry and smile at the same time. He and Davis embraced for that "momentary" cool guy hug, and he continued to giggle and cry at the same time. I commented that it was okay to cry and laugh all at once, it was like it was raining and sunny at the same time. Well, giggles flew and they then changed the subject to the game on the computer screen. All is well. How blessed am I. Simple joy.
* cameras charging for a weekend of graduation and birthday celebrations.
* kids off to barely run and catch the waiting bus.

* car painted and decorated with balloons and candy to help celebrate.

*Breakfast dishes done.
*lab results in with reasonable news. The strain of strep will hopefully only need one of the two antibiotics. One of the IV antibiotics is discontinued.(yes, it was the 90 minute infusion.) That will simplify the 5-7 pills given twice a day, and the IV to only one three times a day.
*sign for home health delivery. not complete. will call to have the rest sent back out.
*walk slowly to the mailbox, hoping that there are more graduation and birthday mail that the regular stack of bills and statements.
* finish ironing the graduation gown.
*Run to the elementary to take photos of after school kids on their way to walk home or go for ice cream.

*Davis has darling friends show up after school to have him sign yearbooks. Thanks friends. *a good friend has people sign a yearbook for Davis. Thanks Cody
* gather graduation gifts..wrap...card
*settle all medical information and precautions with Davis and his "buddy" of the night. Thanks Uncle Jon
*neighbor calls and says she is bringing soup and pizza. What a relief, had not even thought about that one yet. Thanks, Natalie
*other neighbors and family take the other kids around for their fun of the day. Thanks Natalie Lisa and Melyn.
***I hesitate in naming names because there are so many kindness' every day, I thank you all for your continued service and care...AIR HUGS TO ALL!!

*Graduation was fabulous. Not as long as we had anticipated. We are so amazed at the accomplishments made by Courtney, especially the past three years. We had a great time with grandparents. Thanks grandparents. We went to a restaurant that had options for gluten free food. Courtney ended up having a won ton piece in her rice that cross contaminated her meal. She is now at the all night party..hoping that it was a mild exposure and she will be able to enjoy her night.
*Home, Davis is feeling pretty good and just beat Uncle Jon at a three hour Risk game. Kids back from all parties and decontaminated.
*Medications given
*Courtney's room decorated for arrival home in the morning for her 18th birthday. Complete with balloons, flowers, sign and Ben's "laser-like trap" made from crete paper back and forth across the room and the infamous handmade quilt on the bed.
*Dishwasher running, washer and dryer going strong.
*Temperature holding, alarm set for hourly temperature takes.

Sleep is calling in waves of red stinging eyes, neck burning and the inability to think one more rational thought.

Pictures to be posted soon.

Good Prevails!

Yippee! Davis was able to come home on Home Health and IV antibiotics today, following a successful platelet transfusion with no reaction...Yippee Skippie!
We had a few more issues that delayed our discharge, but in the end, we walked out into the sunshine. We are so glad to be home. We just had our two hour training for our IV care and we are good to go. We are on a tight schedule for the time being...something we never see on the first day of summer. Maybe we will have a summer full of structure and routine? Hee hee
Onward and upward!

Happy summer everyone!

This Thing Called Life!

We have a deal in our family that when it gets bad, we try to acknowledge the good. This week has put that theory to the test. Davis, of course continues to be the ultimate patient, patient.

Here is the latest;

Fever Sunday night admitted 4am Monday morning. Started on IV antibiotics. No fever for 24 hours...thought we were going home. Bad news, Tuesday morning, the blood culture came back positive for an infection. This is stressful due to the lack of an immune system to fight such infections.

Bad news, it is Strep. Better news, it is hopefully a strain that is very responsive to antibiotics. Bad news, we wait another 24 hours to see exactly what strain. Good news, no fever since Monday.

Bad news, his gums are swollen and thickening from one of the medications and it is difficult to eat. Good news, he likes soft foods? PCMC has daily mashed potatoes, fruit smoothies and jello with whipped cream!

Bad news, his kidneys are showing some signs of effects from the medication. Good news, that lab came back a little better today.

Good news, we can be discharged on home health and antibiotics hopefully Wednesday. Bad news, the lab result did not come back in time Wednesday afternoon to go home. Good news, hope for Thursday to go home.

Early morning bad news, the lab result was mistakenly contaminated and will have to process another 24 hours. Good news is after STRONGLY and KINDLY speaking with physicians that if possible to go home on the current antibiotic as long as he stays fever free, we could still go home Thursday.

Bad news, his platelets have once again dropped and he will need a transfusion before we go home. Good news, we can get the transfusion now in room and hopefully avoid a weekend ER trip.

Bad news, he will not be able to be there for yearbook signing. Good news, he has great friends that are having his friends sign it for him. Thanks. Good news, he has had wonderful teachers that have been working with us at home for the past 10 weeks and he WILL be able to go on to the ninth grade in Fall. Thank You.

Bad news, not being able to see Courtney graduate on Friday. Good news, hope that he will be home for her 18th birthday on Saturday...he loves that girl.

Good news is that he felt good enough yesterday to beat a volunteer(even one-eyed) at a few video racing games.

It is truly one of life's most challenging concepts to understand that we must endure the bad to fully appreciate the good. We continue to hold on to the hope that at the end of the day there are more good news moments than the bad.

Today, I linger at the poster in the hall...

[HOPE] is a powerful
medicine

Angels among us

Have you ever noticed that on some of the more difficult days, you are surrounded by angels to buoy you up? Today was that kind of a day. The news came at six am that the blood cultures taken 24 hours earlier were positive for an infection. Davis is also experiencing some sort of rash that has the team in discussion as to the source.



Jeff and I traded places early afternoon and I went home to a group of absolute angels helping me clean my house. Not just any clean but these Merry Maidens dusted every item and disinfected every surface for Davis to come home to a germ safe environment. My heart was overwhelmed as we cleaned, chatted and laughed. After I got over my initial fear of so much service, and they all signed an agreement to NOT disclose anything about the state of things upon their arrival, the tears of gratitude began to flow. Good neighbors from the past showed up at the door step with generous gifts of friendship and happiness. Other angels showed up outside for yard work, dropped off kids and stopped in the middle of the road to hand off fresh baked bread.



I truly felt the power of hope and love.



We hope you know the tremendous love that we continue to feel is a great source of peace for our family. The ability of a community to provide such self-less service is truly a testament to the good that can be felt in the world. We pray that all our angels will know of our indebted gratitude and love for each and every one of you.