Have you ever heard???

Have you ever heard the cry? It’s a voice inside your head that won’t leave you alone. A mash of emotions trapped inside with nowhere to go. The voice is always there, begging, nagging, wondering, encouraging or discouraging depending upon the day, but do you hear it? Do you hear it cry? It cries for freedom, it cries for solitude, it cries for exhilaration and it cries for despair.

Have you ever told it to just shut up? To leave you alone? Do you find yourself arguing with it while driving in the car? Does it make you crazy just when you feel life isn’t crazy enough? The voice cries out, yearning to be heard but you swallow it down, forcing it into a state of mute while smiling on the outside hoping no one around you hears its needs. Have you ever heard it cry?

Over the last two years my life has been blessed. It has been hard, it has been emotional, it has been; well it has been hell. But through it all I have been blessed to talk with so many people and touch so many lives. To share correspondence with just one person walking in the very the same shoes makes every moment staring at a computer screen while typing my life to the world worth it! All I have ever wanted is to share, to explore and to help. To hear my inner voice cry.

During any time of hardship or struggle there are always those looking to find something wrong with you? Its ok, it’s not that they or anyone else is doing something wrong, for the most part they care and are trying to help the best way they know how. To intervene. We are all taught to intervene from the time we are children, but what we are not taught is what to do after we have intervened. You see I believe every person is different. People handle things differently, they handle stressors differently and it’s ok. Just because someone is not living up to your expectations of how, where, when and why they should behave doesn’t mean they’re doing it wrong. It just means those of us choosing to intervene, whether it be loved one, family or friend, need to broaden our horizons learning to accept and understand. For you see that wounded person is listening to their inner voice cry.

Maybe they have never heard it before, this inner voice and this new found annoyance keeps them up at night, or maybe it’s always been there but now that person is listening, hearing the voice and understanding its hunger to be heard. Hardship, or tragedy has turned up their hearing aids. Either way, it is that person’s voice to listen too, and they will listen to the point of acceptance or denial. During these times of trial this person may need nothing from us or they many need complete and total support, but believe me when I say, the inner voice is crying out and it’s running the show.

On a particular day when things weren’t going so well I found myself in a full blown argument with my inner voice. Long list of things to do and I felt as though I was losing the battle. In the middle of it all I glanced into my rear view mirror to see Parker gazing off into the distance with that faraway look reserved for those who have checked out from their current realm, entering the wondrous Walter Mitty world created in our heads.

I asked; Hey Park do you ever answer the voices in your head?

He smiled without breaking his gaze out the window: Why yes I do.

How many voices are in there little buddy?

Only one dad, but there is room for more!

With that, a sly smile and a gleam in his eye, my dry humored, wicked smart eleven year old boy let me know he understands.

So when you hear the cry from deep inside, don’t ignore it. Listen, that voice may be your savoir or it just may be the only one who is listening at the time. Either way over the last two years I have stopped pushing it down deep inside, acting as though it doesn’t exist, and because of that, my inner voice has been able to put pen to paper as it were for everyone to know the true, what, where, when, why and how.

Ms. Jacy is hearing her inner voice cry as well! It is screaming to heal faster! As though the Bionic Woman were trapped inside just waiting to roll out that super human strength! Yesterday we walked, climbed some stairs and tried to make it up her dad’s driveway a bit. She did great, but as with any exertion for her at this stage it came at a cost. She went in laid down and drifted off to sleep. Her medications leave her pretty well zapped. The bladder issue has not resolved itself so Platelets and blood are still the order of the day. She has an IV pump tagging along with her where ever she goes and there are 23 medications consumed three times a day. UGGHH!!

But here is the best part. She is no longer in the hospital. She is able to nibble on regular food and this makes her smile. Although she definitely does not like being told to what to do when it comes to her nutrition. We spend a lot of our days talking about the future, being thankful for our amazing families and sleeping. Yep when I am on Jacy duty I actually get to sleep a bit, something my body has been lacking for a very, very long time! It is nice to be back next to my girl.

The kids had a great winter vacation. Thank you to everyone who helped make my children’s Christmas extra special! All my love to you all! The kids of course received the best present ever when their mom came home to her dad’s house. They stayed at Grandpas from the first of the year until late last night! Spending their days with family and their mom! Everyone was so happy!

So we move onto the next phase. Weekly trips to see Jacy on the weekends and closely monitoring her progress. She has her Step-mom by her side daily. Gina left her job to care for my wife and we are forever grateful for this dedication. It leaves our entire family at ease as we know how well she is being cared for! Everyone keep those prayers coming as we have a long road to go and I firmly believe it is because of all your prayers we have made it this far! God bless you all.

Time to go, I hear my inner voice crying…..

buckle up

So I sat in a barn..

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Yesterday after cleaning house, shuttling children, and spending the better part of an afternoon fixing my tractor (something I hadn’t planned on) a feeling of failure for accomplishing none of my daily goals swept over me yet again. Frustrated and tired, I fight a daily battle of just giving up. Wanting more than anything to walk into the house, climb into bed and pray that maybe I’ll just sleep until this is all over. Lucky for me my will is stronger than my lazy ass, feel sorry for myself attitude so I did something I haven’t been able to do in a while.

I walked into the barn and just sat down.

Now for some there could be no understanding of just how important that moment was for me. You see with life running at a hundred miles an hour there is one thing that has been cast aside day after damn day. My horses.

Jake is doing a good job. He is riding them when it’s not raining, making sure stalls are cleaned and they are fed in the morning. One of our borders Ms. Lisa takes care of them all in the afternoon, spreading the very same love and care I would lay upon them if I were here myself. But I am not and that is my mental meltdown.

Mornings of days past haunt me like an elderly hunting dog who can no longer hunt yearning for one more chance. Feeding, walking, riding, cleaning stalls then heading over to another ranch where the rest of my morning and early afternoon are filled with more horses to ride/train and of course working cows. To enter a show ring, scared to death and no matter the score when it’s over ride out having learned something new. A dream constantly plaguing me, that one day I will ride into Fort Worth on a good sound horse, under the lights with fresh cows. It’s all there, teasing me, feeling father and farther out of reach.

So what does sitting down in the barn have to do with anything?

It is where it all begins. We move so fast every day we forget about our dreams, putting them aside as life throws roadblock after roadblock in our path. Every second centered on the next dollar, the next moment with our children, appointments, sports and well LIFE. Our priorities and supposed priorities.

So instead I chose to stop and sit in my mares stalls. Cassie is my rock, she is a special horse for me. Most stories about people and horses for some odd reason revolve around little girls. I am sure it has to do with ponies, then unicorns, oh wait, pink unicorns and of course countless books written about a girl and her horse! Yet I have seen more than my fair share of grown, tough, grizzled men shed a tear over the loss of their riding partner, their friend. The same dynamics apply for us boys/men as do the girls/women, these animals we’ve spent countless hours riding, training, growing to know and understand become a part of you. As a boy you are John Wayne or the Lone Ranger, Quigley down under or the Man from Snowy River! As a man they are your roping partner, cattle mover or cutting friend. They become a sounding board for your day, they listen to your frustrations without arguing back and keep you in check when your emotions filter into the riding experience. These four legged beasts continually teach us every single time we are around them, whether its patience, empathy, kindness, sharing, determination or love. It’s all there every time they are around, and if they get sick of your attitude because you are the one not listening to them, well you just may find yourself looking up from the ground as a muzzle is looking down upon you. If we are smart, we slow down, take measure of ourselves and reward them for all they have given to us.

Sitting in Cassie’s pen, she snorts at me, walks a few circles as if to ask what the hell I am doing there in her space. Then realizing there was much more on my mind than just occupying her space, she walks over, tips her ears forward and slowly leans up next to me. Once my hands are upon her neck her head drops and she leans a little more. For the next 30 minutes she listened as I apologized for having not been around. She is a funny horse, if she knows you she will talk back, little grumbles here and there but for me it’s like sharing a cup of coffee with an old friend.

I looked around the barn, not at the barn, but actually looked around it feeling disconnected. I think I needed to feel that moment to help me reconnect and reaffirm that although this journey has been a very long two years, in the grand scheme of things it is only a blip in time. Leaving Cassie’s stall she whinnies at me as if to say; hey dad, don’t go! I gave her some fresh hay and moved on, heading over to my daily rider, my amigo Mr. Tank. Checking in with him was much the same, except this old boy is still a proud stud, therefore he doesn’t have much to say unless you are a mare. Then, well he is the Barry White of the barn. Walking around I checked on the other 15 horses in our barn, said hello to each one with a little pet/scratch time in between and by the time I was done, my world was a bit more centered.

I am blessed for all that I have. A great family, good kids, a wonderful place to call home and barn full of some of the coolest animals on earth. Tomorrow is another day, so we will keep trying.

Jacy is still fighting hard. As I have said before we are in for a long tough battle. We were lucky enough to participate in an E-wing Christmas party the other day and it really brought some wonderful Christmas spirit to those who attended. Christmas Carrols, hot coffee and cookies, plus handmade stuffed animals for everyone! I never tire at the caring that comes from each and every staff member in this wing. In a place where it would be easy to only see the negative there is nothing but positive all around! It is never a place one would dread to be, and I am speaking from the patient/family member side of things. I can only image how it must feel to work there, they are all truly special people.

Jacys bladder continues to bleed, we are still hoping for a miracle but know this invasive procedure is right around the corner and as Ms. Jacy says; if it gets me outta here well then so be it! Her diet has been increased again and as of yesterday I watched her eat a turkey burger!!!! It was awful and she could only stomach half of it, but what an incredible step towards walking out! She almost has a full covering of hair upon her head and she is walking a little more each day! Her lungs are still giving her trouble but the breathing treatments she receives twice a day seem to help. What an amazing fighter my wife is, she inspires me everyday.

So hopefully we continue gaining ground, nothing would make our family and of Ms. Jacy happier than seeing her at her dads sometime in January! Please keep us in your prayers.

Christmas is coming, be thankful for all you have for it is not a gift that makes your life wonderful it is the gift of life that makes it all worth living.

 

 

What a difference a day makes

What a difference a day makes

Twenty four little hours

Brought the sun and the flowers

Where there used to be rain

~Stanley Adams-Maria Mendez Grever~

 

Yeah it’s a tad corny I know but you see yesterday Jacy and I had a meeting with her doctor. Now for the last 48 hours work has been my home. Any information received was met with fret as no alternative exists for me in regards to any form of action. In reality there is no “action” to provide for as hard as it is to abide, my wife’s wishes remain the same. Take care of children, ranch, work and you before coming to sit by my side. Being a good husband I try my hardest to fulfill her requests.

I digress… The last 48 was met with daily updates in regards to a nasty gastrointestinal bleed (yes the very same one we have been discussing for the last 7 days) which has grown considerably in volume since the last time we prayed for it to stop. Within the last two weeks another conversation has repeatedly taken place in regards to Jacys care should this bleed become unmanageable in combination with several other issues that keep rearing their ugly head! Not a very comfortable conversation to have.

Now back to the GI bleed. It just would not slow down! Her volume increased, several options were discussed and throughout the last 48 hours her intake of fresh blood and platelets expanded to a point where it became prudent for an offensive stance as opposed to continuing with the defensive wait and see position. Several phone calls were made, and I being trapped within the four walls of one second home (my fire station) began pacing the floor. Talk in regards to urgency of care, ICU and paperwork which appeared unclear to some being properly disseminated so there would be no doubt as to our wishes should this bleed progress with no option for repair.

Nuclear medicine was advised and late Wednesday evening she was shuttled down for a radionuclide scan. A very small portion of blood was drawn then mixed with radioactive isotopes. Once the two were “shaken not stirred” they were re-administered into her vascular system where a machine rapidly captured pictures using gamma rays emitting from her blood to track, trace and locate any bleeds. By 10pm no conclusive evidence had been found. Early Thursday morning after checking her numbers her doctor decided another round of photography was in order as her output was increasing. By noon we had our answer.

Arriving to Stanford at 1130 my mind was weary from 48 hours filled with negativity. You know the very demons I have written about prior, taking hold of common sense and reality, forcing you to dive into the deepest most negative places your mind can go. Yet, I did what I always do once my shoulders pass through those gigantic, elegant glass doors. I stood up straight, put on my best poker face, took a deep breath and walked through as if I hadn’t a care in the world! If only it were true.

I hadn’t been in the room long when Jacys doctor came in. Prepared for the worst, simply because that’s all I’d thought about for the last 48, plus after seeing how much better Jacy appeared I just knew her appearance couldn’t possibly be indicative to her reality. Doc greeted us both, sat down and proceeded to give us a general, sanitized run down of where we were in regards to status. You know, like that little teaser they print on the inside cover of a book that leaves you wanting to either buy it, mull it over or throw it as far as you can. Afterwards he took a deep breath, started talking quickly and confidently while throwing it all on the line. Something I truly admire about this man. Basically; Jacys body needs to start working! They located several bleeds in a section of small intestine and though many options had been tossed around from surgery (although there was some confusion as to where that little rumor started) to an endoscopy procedure where they would cauterize or put a spring style blocker in to slow and stop the bleeding, to continuing the current course which would be platelets and more blood.

This doctor is a fan of giving things a chance. He circumvented a solid push to have Jacys bladder treated with chemicals to stop it from bleeding. These chemicals would have left her incontinent. Why did he do this? He felt even though her bleeding bladder had gone on for much longer than need be, there were other pressing issues and he just wanted to give her body a chance! Result? Clear urine for the last two days! What, what!!!!

Now with many pushing for the invasive endoscopy procedure he stood his ground once again prefacing with: I will do whatever your primary doctor wishes, but you are my patient this month and I am going to fight to give your body a chance! All we need is blood, and we are the largest user of blood anywhere, believe me there is plenty on hand!

When asked how Jacy felt about this she stated that since yesterday the amount of blood coming out feels as though it has slowed down. Her nurse confirmed this to be true, in fact 1/3 as much fluid had been collected during the same previous period of time! To that we all smiled, he (her doctor) smiled the biggest and proceeded to cover some finer aspects of his plan to which we all happily agreed! So we proceed, more blood, more platelets, more waiting and more prayers! I believe not only is she in good hands with her doctor this month, but that something else might just have something to do with it!

What a difference a day makes? Yes this catchy little song popped into my head. I am a sucker for old music and this hypnotic little 1959 tune just naturally stuck. As her doc walked out the door he patted me on the shoulder as if to say; I got this, quit worrying, and relax for a while. After speaking with him, feeling the confidence he exudes in combination with his very straight forward and at times humble explanations what else could I do?

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Have we turned a corner?

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Everything is going to be alright, maybe not today, but eventually because beautiful things happen in life when you distance yourself from the negative and have faith.

Are we turning a corner? Has our journey gone the distance or is this just another phase filled with false hope? Will we be rejoicing or hanging our heads, heavy with burden and frustration over continued grief?

It appears as though Jacy has turned a corner in her treatment! Day by day, hour by hour, as her doctors continue slowly (and I mean turtle slow) reducing her steroids, she is feeling stronger! Her breathing has cleared up immensely, her intestines are somewhat co-operating, and although she remains on a steady regiment of Lasix, her swelling appears a bit reduced.

Walking these hallways is still a struggle but she is walking the entire hallway, not just to the door and back within the confines of her room! She is eating three meals a day! Although bland food and only in minute amounts it is a positive sign indeed for it translates to her body accepting nutrition!

Jacy’s doctor came in yesterday afternoon to announce they believe it is time to drop her dosage of Jakafi (experimental drug). This is huge! It means she is definitely moving in the right direction. It also means she is slowly becoming one of the 30% that survive this new experimental treatment! Her doctors will begin tapering dosages slowly and in segments. Starting today they will cut a few milligrams from the Jakafi then sit back and watch for 7-10 days. The fear being a relapse of GvHD (Graf vs Host Disease) which would put her right back at square one! Of course no one wants that, but at some point the process needs to begin and everyone on her medical team feel with all the positives lately, now is that time. Fingers double crossed!

Steroid dosages will also be slowly dropped again. She has done very well over the last 10 days since her last dosage adjustment which has been very encouraging. Jacy’s skin, still mottled with red marks, looks more like a giant stretched sunburn than the blistered, peeling abnormality previously covering her body. The doctor says her skin is healing very well and looks fantastic! Her skin looks so well he also announced there will be no more photopheresis treatments either! Such good news and having seen the previous skin condition I would agree with the doc, it does look fantastic! Don’t any of you become jealous when this is all over but she will have the skin of a teenage girl! Of course what would you expect, treatment is only a couple million dollars and you may die, sooooo…

Her immunosuppression drugs will also be adjusted as they fine tune its need in regards to controlling her new white cells and how they operate! This combined with a steroid reduction should allow her vision to improve over the same 7-10 day period barring any type of re-lapse. Her periods of visual acuity have improved, but she seriously cannot wait to be able to see again 100%. I tell her no hurry, she may end up with perfect eyesight and realize what a mutt she married and dump me! Ha!

So are we turning a corner? Does this nightmare possibly have an end date? I think yes.

Yesterday when I arrived her brother, mother and step mom where there and we all had a fantastic time laughing and joking about everything from family and friend dynamics to the absurdity of hospital existence. It was great to see her smiling and chuckling as though it was a normal family gathering at any one of our houses for any number of reasons! The only thing missing was good bbq and a bottle (or two) of wine. I felt great when I left her last night. I knew with all the energy spent with us she would most likely sleep well.

From the beginning I have touted faith. It is not something I just say, it something I believe! Whether your faith is absorbed in religion, a god, a spirit or just a continued faith in yourself. One should have faith, it helps quell any negativity and although I am also a realist, having faith has allowed me a better grasp of working my way through my emotions when they arose.

Does this mean I am no longer scared? No. We still have a very long road ahead of us in regards to a full recovery. In reality we both will remain scared for a very long time to come. A simple cold, cough or sniffle. Her feeling run down, tired or lethargic. Losing weight or gaining for no reason. Any mark, blister or lesion. All these things and more will have us running back to the doctor at a moment’s notice. Hopefully as time passes these feelings will pass as well.

For now, Jacy needs to get to the next level of care which involves her leaving the hospital for her dads house where she will begin daily outpatient care treatments right back at Stanford. She will be with family, in a familiar setting, living in an apartment that we have stayed in numerous times and that is a humongous boost for morale. Not just for her but the entire family.

The next level after three months of outpatient? Come home! I cannot even imagine what it will feel like for her to walk through our back door, live in her own house, sleep in her own bed, and not rely on others for care after possibly 9 months? I am positive she will need to work her way through multiple emotions associated with being gone for so long from her ranch, children, animals etc…

There has been nothing easy about this journey for anyone. It has been and continues to be an uphill climb. But when I think about where we are compared to a month ago, and how well she is responding to treatment in combination with her doctor sharing such good news yesterday? I say yes we have turned a corner and that uphill climb appears to be flattening out just a bit. None of us can wait for the ride down the other side of this crazy ass Leukemia ridden mountain!

Have faith, move forward, when you fall down get back up and try again. For if you have faith there is nothing to hold you back from success but you.

So to the question posed at the top of the page.

I choose rejoice….

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