Tag: blood

What????

theycallmebetty6 Comments

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Never in my life have I seen anything like this and trust me I have seen some crazy ass shit! Last night I came home from the hospital, distraught, worn out, fearing for my family, my wife and myself, for you see the thought of losing the very center of our lives, my wife, their mom was overwhelming to say the least.

So I put out the call!

I have said it before and I’ll say it again, I believe in faith! Now faith is a funny thing, there are those who believe it ties directly to the bible, some believe it is a feeling or an attitude, while others believe it is a positive energy randomly floating throughout the universe! Either way my beliefs are not what matters here, what does matter is as long as I can remember having faith in something is what’s kept me alive and running. Without faith in myself, in God (yes I am one of those) and in the ability to keep an inner positive attitude no matter the situation without disturbing anyone else’s emotional process, I could not have survived these 49 years. Faith has proved me right more times than not and when faith let me down there was always something to be learned from that experience.

Prayer warriors

Wow! There is definitely something about prayer warriors that is mind blowing! Everyone I could ever imagine along with their friends and friends I don’t even know, joined the prayer warrior cause! Last night and this morning I was completely blown away by the amount of people saying prayers for my wife! Even the Atheists in my group were hoping for positive energy to encompass my wife’s being! To say I was humbled by it all is an understatement! I personally believe in the power of prayer, there is something to be said about a mass of people converging their beliefs and energy into one combined focus to accomplish a positive result.

It worked!

That’s right ladies and gentlemen, it freaking worked!!!!! We went from end of days through the doctors own words to; hey there is a possibility you might make it out of this mess! That is huge!!! Thank you, thank you, and thank you!!! A huge thank you to every one of you who prayed, focused, thought or said a kind word while moving through their day. I have said it before and I’ll say it again, she is my world and to see how many people are in her corner is astounding!!!

So here is the gist of things!

Today her doctor came in to report the test results from yesterday’s exploratory investigation and it looks as if the bleeding has slowed down in her gastrointestinal tract. (YAY!) Her lungs continue to be an issue but they are not as concerned as it appears treatable. So after hearing the day before that her body needed to wake up and start working or else! We’ll that’s just what it did! The doctor then went on to talk about another patient who had similar issues to Jacy’s and after a year in the hospital walked out a free man! This man now runs marathons and lives a fairly normal life. Yes he is still plagued with GvHd issues but he is healthy, home and living life to the fullest!! Doc also explained that even though Jacy’s road is going to be rocky (paraphrasing) she has a shot at making it out of the damn hospital! Woo hoo! THAT IS ALL WE HAVE EVER ASKED FOR!!!!!

So to all you prayer warriors again I humbly say thank you!

I don’t care what you believe, there is definitely power in prayer, and positive thought! We owe it all to you guys! Everyone came together, praying as hard as they could and it worked! This morning I opened FB (Facebook) and was blown away by how many people took time to remember why they either liked or loved my wife! People were sharing positive memories of her and I must say, seeing some of you change your profile pictures to a memory or personal experience with my wife was so incredibly touching! Looking up from the screen it was raining, but only behind my glasses! I swear when this is all over I am throwing a huge BBQ, inviting everyone and I plan on kissing or hugging every person who has ever thought a kind thought or prayed for my wife! I spent last night dreading the worst and today I feel positive energy abounds!!! Jacy also feels as though a weight has been lifted from her shoulders, she is still scared of the unknown but there is hope and hope feels pretty darn good!

Keep them prayers coming people! Let’s harness all that positive energy and prove once and for all it just isn’t this woman’s time! She has plenty to do here still on earth and a husband who will stand right beside her!

Once again! Thank you all! I love you, Ill pray for you, and hopefully one day soon I will pay it forward!

Love is something special

theycallmebetty3 Comments

Yesterday I sat with my wife on her hospital bed. Leaning into me we listened to others talking in the room and I staring longingly at her once again realized I am a very lucky man.

It is very easy to fall in love. The world is filled with interesting, beautiful people who intrigue and excite our lust for closeness. Each person’s definition of love is different, thereby allowing varying levels of intimacy amongst those parties involved. There is love acquired over time, love by design, and love at first sight. There are people who know a particular person is the one for them right away and while pining away for their affection develop love through mutual interests. It takes a special person to not only peak those interests but keep them thriving. A person who is willing to walk side by side supporting and surviving every possible situation one could develop or live through over time. For you see, love is not for the faint of heart or quitters.

There she sits. Yesterday while staring at her it came to me that I missed her more than I let on at times. Everyone at the hospital gets to hear her laughter, see her smile and relish in her constant silliness. All the things I took for granted or at times bothered me because of my own selfish moodiness I now longed to have back in my life on a daily basis. I was actually jealous of their ability to bathe in her good Karma.

Today someone sent me a picture of an actress on a current show (I won’t give the pleasure of repeating its name because this show is sheer poppycock) and stated she looked just like my wife! I dismissed it and then after coming back to this picture three, four or five times it dawned on me they were right! Just like that my selfishness missed her hair, her eyebrows, her eye lashes, and her round face with make-up, wearing a slinky dress on date night or goofy overalls on the way to school! I miss the way she smells, her choice of lotions always leaving her skin smooth and soft. I miss her holding me tight while dancing, whispering in my ear “I love you”. I looked at the picture of this actress over and over and I yearned for the wife who at one time didn’t have Leukemia.

I am a very lucky man

Most people felt that way at one time in their relationships but having grown used to their partners they no longer feel a longing deep inside for their significant other. Time, life, work, children and school have robbed them of time they should have spent with each other, instead creating a divide and conquer relationship which ultimately leads to a divided relationship.

I long for her to come home. I hate leaving the hospital, I want to stay there all the time. To hear her laugh between coughing and vomiting. To watch her smile even though the news she has been told sucks. To hold her hand even when she feels as though she is a thousand degrees. To walk with her down the hallways even though she must have help from a nursing assistant. To sit and eat lunch like two old people with no teeth! She with soup and me complaining there isn’t enough candy in the drawer.

In the past we too were a divide and conquer relationship! I divided to conquer and she wanted us to handle things together. She never gave up on me even though there were many times she could have, many times I may have needed to talk her into one more chance, she calmly continued loving me. Stubborn and tough she never ever gave up, she always knew that even though I was going to fight, kick and scream, I would come out the other side, wiser, gentler and more giving.

That is why it’s my time to be there for her! I know she is kicking and screaming on the inside! So I keep her going, telling her it’s going to be all right while showing her how to remain calm, think things through and understand there is a better tomorrow for her waiting. When this is over and she comes home she will have known I never gave up on her, I calmly helped her to understand it is ok to feel sad, ok to feel frustrated and ok to want this all to end as long as you vent it all out and then restart towards the finish line. She is fighting hard, but she is not fighting alone. She is not superwoman, she did not become the fighter she is today without losing a few rounds in life. She will come home knowing I love her with all my heart and soul, and I am thankful for all she has given me.

Our lives will never be the same. Leukemia has made sure of that. But what our life will be has yet to be written. An open page awaits us and as much as I long for the wife of days gone by, I cannot wait to see what life has in store for us as a team, a couple, as friends who are lucky enough to be married to one another.

Like I said; it is easy to fall in love, staying in love is something very special indeed.

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It was a very good day..

theycallmebetty5 Comments

mom and parkerStrolling into the quad my daughter, son and I all turn the corner to see Jacy taking a breather from walking during physical therapy. Standing quietly we wait a second as to not startle anyone. Jacys mom see’s us and starts squealing with joy. Mom is happy. Out of breath, mask covering her face you can see smile lines around her eyes as they struggle to fixate on two small silhouettes. Our children each take turns hugging her then wander over to the rolling chest of body isolation gear to begin the arduous struggle associated with a 10 and 11 year old trying to don these items. After a few minutes and what appears to be a 3 ½ foot high stellar version of Tommy Boy’s Fat guy in a little coat, my son puts both hands in the air with medical gloves on and says; doctor? Yep it’s going to be one of those visits.

Once inside Ms. Jacy’s room she claps her hands with joy as her children lay a little more love on their long lost momma. Questions about school, life, sports, rodeo, the ranch all flow freely as a mother needs to know exactly how her children are faring without her. Yes I have kept her abreast of every activity, function and behavioral (both good and bad) condition associated with these two monkeys. But it means so much more hearing it directly from their mouths. She is beaming.

Jacy lets the children know how happy she is they are there, gives them a simple version of her current condition and apologizes for the fact she cannot see them very well. Her eyes are back on the blurry side which makes for a lot of squinting while searching for each person’s location through vocals. Both children ask a few more questions followed by laughter and silly kid actions, afterwards things begin to settle down. Good thing as there isn’t much room for horseplay.

Now I remember being a kid and a hospital room was the last place I would ever want to be! Parents telling you not to touch anything, to quit making so much noise, to stop touching each other and above all else quit fidgeting in those chairs! Today would be no different as most of those words came out of our collective mouths at one point or another. Yet they smiled, acted as though a behavioral modification had just occurred while finding a new way to fidget or make sounds.

A suggestion was made for a trek outside and with her nurses blessing we loaded up then traveled to the fountain. The fountain is a wonderful meeting place. Water flowing, plenty of shade and ducks traveling around unmolested as if they owned the joint. We almost didn’t make it there as while pushing Jacy through the lobby doors in her wheelchair the I.V. stand became ensnared in carpet almost crashing to the ground! Fast hands by both Jacy’s mom and a nice lady who happened to come through the door at that exact moment saved the day! Jacy was a little frazzled after that interaction but a few deep breaths and her anxiety quickly waned. After all when you are this close to the outside as a prisoner you don’t let one little bump in the road keep you from freedom.

The kids ran around, the adults chatted away, at one point her mom went to get her a paper mask so we could hear her better as she spoke. Parker would come by just to get a hug and say hello, then run off to play with his sister. We had 30 minutes and we were going to make the very best of it.

Back in the room Jacys mom said goodbye, spreading more love on the munchkins’ and a big old hug for me. Once her mom left we all settled in, found a movie and silence fell across the hospital room. An hour and half went by, not a word was uttered, and we just sat there, like old times, at home, watching a movie together as a family. It wasn’t the most perfect of settings, it wasn’t the best TV or the highest quality sound system. But we were all together, it was perfect.

It is always hard to leave. When I am here alone it pains me to walk out the door, but when the kids are here it is doubly as hard to say goodbye. They are all good sports about it, their mom no matter how hard she tries to look positive always has a little sadness showing around the eyes. I cannot imagine how she feels, what is going through her mind, how her heart must break every time they close the door behind them. One week to three weeks, that’s how long it is between visits from her children. She gets me two or three times a week then her step-mom, mom, sisters and father fill in the remaining gaps. A virtual revolving door of family making sure Jacy is never alone. But your children, they hold a special place in your heart and they definitely hold a special strength when it comes to the healing process.

By the time we got home they had been asleep in the car for quite a while. When we walked out the door of Jacy’s room she too was fast asleep within moments of our departure. Looks like everyone got all the love they needed. Squeezed, kissed and hands held to exhaustion.

It was a very good day indeed.

Hi ho, Hi ho, its off to work I go…..

theycallmebetty1 Comment

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It felt strange pulling into the parking lot and I have no idea why. I have stopped by a hundred times over the last few months, yet walking into the building it was as if a giant weight had been lifted from my shoulders. Moving effortlessly down the hallway with the lightness in my step of Danny Kaye (only us old timers will understand that reference). I opened the door to our day room and was instantly greeted with the boisterous banter of a warm firehouse. The back and forth one liners that are often associated with this type of setting are what in-house legends are made of. My smile broadened.

Individually guys would walk up to say welcome back, I greeted them with: hey I am the new guy James, nice to meet you, division sent me down so anyone know where I can put my stuff? A couple good chuckles were had, I grabbed a hot cup of jo and sat in a very familiar chair. I was home again, with people who have supported me as only family could. Sighing a very heavy sigh, at that very moment all felt right with the world.

Friday was my first day back in the firehouse and I was shocked at how much I missed it, all of it! The chores, the calls and of course the guys! Two months are a long time to be away from work, let alone people you consider your second family. But here I was, knocking the dust from my helmet, going through my turnouts and checking all my gear. I was smiling, actually smiling and feeling the warmth that came with that smile. Gone for a few moments was all the worries associated with my life, it felt great.

That feeling was short-lived as before we started our day I gathered everyone around to give them an update on Jacys condition and where we were in regards to treatment. It was an awkward silent time. I understood. What do you say when a co-worker/friend gives you that much information? They all feel my pain and understand it is very difficult for me to adequately express those feelings while meeting everyone else’s emotional needs. But one thing is always a constant when it comes to this family, each one has my back, as I would have theirs in a similar situation.

We ran calls, did chores and by mid-day ended up downtown for the annual Downtown Business Association Halloween hand-out! How fun! Handing out candy to hordes of kids all dressed up in their Halloween costumes! Meeting people, talking with kids, joking around and generally having a good, old-fashioned normal day, as if nothing else was happening in my life.

That night was hard. I didn’t sleep well, tossing and turning in my now unfamiliar bed. When I did sleep I awoke confused, disoriented and afraid. Worried that something bad was about to happen, scared that my kids needed me, panicking over an inability to just drop things and leave in case the phone did ring.

The second day was fine and the second night not much better. My worrying seemed to be getting stronger, I consoled myself that there were only 6 or so hours left and that my children can make it without me. I have raised them to take of themselves and I know Cody will do a great job! Hell in the 1800’s dad would leave the 8-year-old in charge of the 6-year-old for a week! It all turned out ok most of the time, right?

When I got home the next morning my overall feeling was of relief. I had made it through a 48 hour shift without losing my mind. I had proved to myself it could be done, that letting go of some of my worries must happen. My heart was filled with joy over the reunion of my crew and the interesting calls we had run during our rotation. It felt good to have my mind and body back in a normal groove.

I spoke with Jacy this evening. Her prognosis is still the same as things haven’t changed much. She still smiles and see’s the positive outcome although we have started talking more about the “what if’s” with her doctor. I don’t like “what if’s”. They weigh heavy on my soul, leaving me nervous and gun-shy. Once the lights go down late at night after I say a prayer or two the “what if’s” start gnawing away at my insides. Eating at me, taunting me into believing they are real, testing my faith. It’s like they are a broken/scratched record playing over and over again in my head. Certain nights they bring me to tears as I drift off to sleep. I awake several hours later in a cold sweat, face and pillow soaked as they play out their dirty little mind games while I dream. I don’t particularly care for being the unwilling participant in these dreams so I struggle to stay awake staring at the ceiling and wondering why?

Faith is a tricky bitch. You must hear any and all negatives to fully understand and reinforce any positives. To have faith is to attest unconditionally that through faith only one outcome can become a reality. In turn you must suffer through many negative thoughts processes to achieve faith. You must sort them into categories, holding onto only those entrenched in reality. Once they are in a neat little folder wedged inside your mind you can proceed to judgement though careful, faith driven evaluation of any situation. The tricky part is understanding the importance of negatives while never allowing them to overtake your positivity based upon faith. Some nights that is harder than others.

Tonight as I write, the empty sound of my house is deafening. The dull drone of silence beats loudly in my ears. It is time to go to bed and I tire of my best friend not being there when I turn off the lights. Like a small child clutching their blanket or bear to keep away evil spirits at night; how I wish my wife was here so that just one night I could clutch her while sleeping peacefully, be protected instead of the protector, guarded from evil dreams continually questioning my faith. Only then could I awaken the next morning to find this was nothing more than a really long, extremely bad nightmare.

But that is not to be so I toss and turn some more, constantly fighting faithless thoughts in the dark while counting down the minutes until I can hold her again.

I love you honey, please come home soon….

She shines…

theycallmebetty4 Comments

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You pass by her or someone just like her on any given day. A smile, a wave, a kind hello. Sunlight radiates from within, bringing warmth and security to all who surround her. A light, a ray of hope, a beacon in the fog, an uplifting hand when you are down. She sees everyone and everything, never letting even the smallest of details, events, emotions, or troubles pass by her watchful eye. Why? Because she genuinely cares. Her storms can rage like the mightiest of hurricanes soon settling, defusing until rest comes upon a peaceful shore. Sunbeams litter the landscape in its aftermath revealing a renewal of all surrounding her. Of course this is what she wanted all along, for she knows exactly how to get her way.

Until now.

Jacy has been tempted time and again with promises of freedom only to have her body veto. She remains in room 41, locked away from the world she knows, the family she loves, the friends she adores. Doctors come and doctors go, all with the same agenda, to heal this woman and send her home where she belongs. It is not for a lack of trying, or because they wish to keep her secluded for scientific purposes, on the contrary, like any professional athlete these doctors hate to lose. They take their jobs very seriously and it shows. To make matters worse for this crew of cranial geniuses, they just so happen to like her. There isn’t a one of them that doesn’t like my wife and do you know why? Well first of all if you do know her personally then that was a moronic question. But if you don’t, if you don’t know my wife then reference the above material. For it is all true.

The other day when I arrived her room was filled with attending doctors and students. They yammered on about good news here and not so good news there, how if one thing happens we may have other options and if another happens how options would be limited. Covering bacteria, viruses, internal bleeding, and further medications. Standing in the corner gazing upon the herd like a pie eyed cowboy it amazed me that with all this information she still smiled and said; thank you. She made jokes about the bad and quipped about the good. She never ceases to amaze me.

Her light, her inner light is always trying to shine! The internal batteries may be faltering a bit but she somehow generates enough power to smile and say thank you, to everyone or anyone that will listen! She strains to speak at times but it doesn’t stop her. She is fighting so very hard to live, to move past this episode in her life, to come home and see her children grow up! Having now been incarcerated inside E block for 127 days, she inspires me daily. I hurt all over, I can’t sleep, I am eating but not well, yet no matter how sorry for myself I begin to feel all I need to think about is the woman who gave herself to me, withered away to nothing but skin and bones still smiling, still saying thank you, still striving to make someone’s, anyone’s day with kindness and love.

Meningitis

Meningitis is a relatively rare infection that affects the delicate membranes — called meninges (men-in’-jeez) — that cover the brain and spinal cord. Bacterial meningitis can be deadly and contagious among people in close contact.

Viral meningitis tends to be less severe and most people recover completely without specific therapy.

Fungal meningitis is a rare form of meningitis and generally occurs only in people with weakened immune systems.

Yep that’s where we are right now. Meningitis, some bacteria formed upon one of her heart valves, a still bleeding bladder and now to make things more interesting she has begun having bloody stool. Today I believe she needed 5 blood transfusions. Every time this woman gets a leg up, something kicks the good leg out from under her. Two weeks ago we were laughing and counting down the days until outpatient was achieved. We are currently sliding backwards. I am not sure if we are back to square one, but it sure feels close. It has to feel like an impossible mountain to climb for my wife, yet she rarely shows it.

Monday when I arrived after listening to the where too’s and what fore’s spewed forth from the doctors with delicacy as to not upset or misinform I took a seat. Eyes heavy from a lack of sleep, brow furrowed after looking at my wife’s soft, doped up face. My shoulders slumped with the weight of it all and I did what any other rational husband would do at a time like this. I passed out. Yep that’s right! No sooner did I exchange pleasantries with everyone was I crumpled up like a used napkin left wedged into the furniture. Saliva dripping from my mouth, my body off kilter hard to starboard, barley able to stay in the chair. An hour later I awoke to see family members leave as my wife moved in and out of narcotic consciousness. Making my way over to Jacys big green auto reclining chair I rendered a hello and a kiss on her forehead. She asked how I was, I replied tired. She mumbled me too and both of us passed out again. This time for three and half hours. Somedays it’s all too much.

She contracted a fever that day and it started a ball rolling that just pushed her even further away from outpatient care. I was informed this morning she had in fact contracted meningitis as described above. What the hell? Why can’t she get a break? Why can’t her body just let this all happen so we can take her home? How long do you think her sun will continue to shine kept captive in the confines of E wing?

I worry about so much, every day about so many damn things. But of all the things I am worried about, I worry most about her ability to stay positive and keep those rays of hope alive. To shine brightly, not letting all of these repeated setbacks snuff out that light. I am so terribly worried..

I pray God knows what he is doing..

The wedding crasher…

theycallmebetty8 Comments

Standing in the shadows of an open dimly lit arena. Sparkling white Christmas style lights strung through roofline trusses bring a serene glow to this event centered on two young people professing their love. They stand before family and peers, nervously speaking as to this union, this moment, hands twitching bodies touching for support, faces beaming as if they just won the lottery. Little do these two know they have and it will take some time before they fully understand exactly what they have won and the stakes involved.

My eyes dart back and forth, as through a microphone sounds of tears falling reverberate across this vast space. I am alone, the woman I married is not here; she lies in a hospital room far away. My heart aches. There is something about a wedding that always brings it in for me. Whenever Jacy and I attend a wedding we always hold hands, we always relive that moment 14 years ago when standing in front of family and friends we said; I do. Looking into her eyes, no matter what our lives hold outside this very moment we always know we made the right choice. The sacrifices were worth it and every day brings a new sunrise, a new reason, and another chance to fall in love all over again.

Everyone is so happy! The tables clumped into groups, families tied together reminiscing over old times while devouring food and drink. I came as a guest, a friend of the grooms’ family. I knew hardly anyone which was refreshing. It allowed me a rare chance to sit and watch unmolested. Smile at new love, chuckle at old love still trying, and witness youngsters sizing each other up from the sidelines. All I could think about was my girl and how lucky I was to have her in my life.

A few weeks ago a wonderful woman was explaining to me how my blog moved her. She could not believe one person could write about the troubles that have befallen our family. How easily I share feelings the way I do, professing my love so publicly. Sometimes when I finish writing a piece I too have a hard time understanding what has come from brain through my fingertips onto the screen. I think about the kid who hated school, who struggled with bad grades, who lived only to party and cause mayhem with his friends. I wonder about individuals who held no reservations in explaining to me on a regular basis that I would never amount to anything and what they would say now. Heck, I believed them for a very, very long time.

My writing comes from experiences, from love won, love lost and love taken away permanently. Writing was never easy for me, it was and still is hard! But over time I have found my voice, my muse, my, well my being. It is my release from the day to day tortures that haunt us. Everyone has them, they are in different and varying degree’s associated with all aspects of our lives! Without writing them down, releasing them from my cranial vault, they would in fact weigh me down to where I am certain I would not be able to rise too any occasion. The writings on my blog are a mere fraction of what is stored upon an electronic cloud.

As this woman spoke so kindly of me her husband jokingly replied: Thanks James for ruining it for the rest of us. Now I have known him for a long time and his pithy comment was intended for a good chuckle. I took it as such chuckling along but as the weeks went on, it crept into my psyche, slowly gnawing at me without remorse. It has been eating at me ever since, chewing my insides like a cancer and we all know how well versed I am on that topic as of late. How have I ruined anything for anyone? This is my story not yours; I am only sharing this journey in hopes it reaches and helps someone else, another husband, partner or longtime friend traveling down the very same road! How on Gods green earth am I ruining anything for anyone?

I mean, hey, I get it, this joking statement admonishing me for somehow pulling my “Man” card from the file of all men by showing how I really feel about the woman who swore to spend the rest of her life with me is somehow wrong! Let me reiterate, I know he didn’t mean it that way, it was purely said in jest! As idle conversation to be laughed at! It is my own brain churning that statement over and over again as if I should carry some form of guilt for sharing anything! But in the end it only proves I suppose that some words, even the simplest when spoken in jest, combined the right way can in fact hurt.

After sitting on this for a while I began to wonder, have we as men lost our ability to show how we feel or express our love for another? How many years after marriage are we supposed to quit saying I love you? At what point is our relationship just an existence? Do we simply just cohabitate, thriving off the inadequacies of our significant other, never recalling what it was like the first time we held hands or kissed. Forgotten are the hopes and dreams of a young couple in love? Our lives drug down by normalcy, children, financial responsibilities, the suffering of our friends with whom we bitch to about those we supposedly love?

Jacy and my relationship is far from perfect believe me. We have both spent more than our fair share of times upset with the other over both important and trivial matters. It would go on for a few minutes, a few hours and on rare occasions a few days! It is part of marriage! No couple is perfect! I am more scared of a couple that never fights than a couple who fights, forgives and loves. But one thing about Jacy and I remains through thick and thin. We both LOVE each other unconditionally.

We have learned over time that being in love means learning how to forgive. Sometimes even when you still think you are right. Why? Because when you look into each other’s eyes you should still see that glow, a glimmer in the corner that lets you know she loves you and the person you met all those years ago is still there waiting only for you. You should be able to answer without a doubt what it is she brings to your relationship and why you admire her for it! She should be able to respond instantaneously in the very same fashion.

Listen, if I am ruining things for everyone else, then so be it. I didn’t learn all of this the moment I was married. The person I was before my wife was someone who was angry and in pain. I trusted no one, and put walls up all around me, shoving those closest away. I was self destructive and brought a heavy toll to those who surrounded me and it has taken years of talking and listening to turn myself around.

When Jacy came into my life it was a revelation. I knew, she knew, we both couldn’t believe it. We both fought against it, but we knew. The day I married her my heart exploded with joy and in no time she took to loving me as no other had ever done. She loved me for who I was, what I was and because I was me. Since then I can without hesitation tell you that over our 14 years she has changed me from a arrogant, egocentric, self-centered man to the person I am today. ( I know, not much different right? Ha Ha) I truly disliked who I was before and without her pushing me when I didn’t want to be pushed, picking me up when I had fallen down, believing in me when I felt there was nothing left to give and showing me how to care for others. Without this woman, today I would be a miserable human being inside and out.

There is no way anyone will ever get me to feel sorry for being lucky enough to express my feelings. Jacy Franceschi is my wife, if you have ever met her then you know the instant joy she brings into your life. She is friendly, open and honest, she may say things you don’t want to hear, but they are better said than any wall or wedge being driven between two people over an inability to communicate. She will in fact give you the shirt off her back. Listen when you are down, help you to get back up and cheer you on when things are great. I have never known a person who can make friends instantly no matter where we are, and it is her smile that is her signature trademark!

What is happening to her is beyond unfair! For all she has done for so many it just isn’t fair! Not that God, or any other spiritual higher power you may believe in is keeping tabs on who deserves or doesn’t deserve to have cancer-Leukemia. But for me it doesn’t make sense. I am struggling with why this woman I love, who loves me in return should have to suffer this way. She once told me it was better that Leukemia happened to her than me, because she felt I had suffered enough in my life. That was a hard pill to swallow. But the reality is, I am still suffering, the loss of my wife for the last four months has been overwhelming to say the least! I miss her every day. Her smile, her kiss, her laugh, her down right goofiness at times. I miss watching her and Parker snuggle at night while reading, seeing her and Jake laughing over a goofy joke, I miss listening to her and Cody talk about dog training, I miss her and Jessica talking over the last softball game. I miss it all! It is my family and one person is missing leaving us very incomplete.

She is also the strongest woman I know. What she has gone through is beyond words. There is a reason I only post pictures of her from behind. Out of respect. What Leukemia and the resulting GvHD have taken away from her is more than many of us could ever handle. She is gaunt, without any fat or muscle left on her frail bones. She struggles to walk daily, cannot see most of the time and her skin is mottled red. Her hands shake and she is constantly coughing like a twenty year smoker. She needs assistance to shower, move or go to the bathroom. Yet every minute of every day she greets every person who walks in her room with a smile. She asks about their day, how they are feeling, wanting know who is dating who, who has a child on the way and shows she cares, that she is more than just a patient, she wants to be your friend. She says please and thank you without hesitation and cracks jokes to anyone who will listen. Each time the doctor talks to her about progress she believes it will be next week or the week after that she will go home. Jacy has surpassed many others who tried but haven’t made it this far and she has done it with style, class, determination and grit! She refuses to believe there is any other option but to go home. She is simply amazing, she is my hero and I love her.

Standing in the shadows of an arena, under some twinkling lights, watching two people in love start upon a journey towards an unknown future. A smile breaks across my face, for they haven’t a clue and neither do most. They know they love each other, they know they are now husband and wife and that is all that matters right now. Yet their marriage now becomes about what they don’t know, the future and that’s the way it should be, there is so much waiting ahead for them both. As they walk out of this arena tonight, I only pray they remember marriage is not a fairytale it is in fact hard work, but the payoff is worth every single struggle. I could say I wish we could go back to that day, knowing what we know now, but it wouldn’t change a thing. We still would have done all the things we have done, fought for each other’s love the way we have over the years and worked our hardest to become better human beings. I wouldn’t have it any other way.

I said there is no way I will ever feel sorry for being lucky enough to express my feelings the way I do, and I don’t. I feel sorry those you don’t know how to express theirs. Don’t wait until it’s too late, because when it is, you cannot turn back the hands of time. Regret is an awful weight to bear.

Jacy I am coming for you honey, warm up those hands cause I plan on holding them for a really long time.

us

12 Angry Men…

theycallmebetty3 Comments

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The summons stared me in the face like an angry, arms crossed child. Neither of us wanting to give in to the others wants and needs yet both knowing there was only going to be one winner. A summons for jury duty, reissued as a continuance had already been granted. Myself not really wanting to be there, instead only thinking of the re-arrangements to our already taxed schedule. But as 0630 rolled around and we stared at each other with contempt, I blinked first, the jury summons won thus off to The Halls of Justice we went. (Cant type it without hearing the justice league cartoon)

Standing in line with other prospective jurors it was blatantly obvious no one wanted to be positioned in front of this building. I meandered slowly towards the door, belt in one hand, anything metal in the other, doing my best to not look annoyed as I proceeded through a metal detector. Once inside I quickly found a seat and the waiting began.

Several times instructions were read. Our summons clearly states all blanks on the reverse side should be completed prior to arrival on your assigned date. Apparently only 10% of us understood the instructions or even bothered to read this nasty little note. Finally a representative arrived and began reading from a list of names. There were to be three groups. One group assigned to courtroom 207, the other assigned to 208 and the third group was to stand by as alternates. No one wants to be in the alternate group as there is no timetable assigned. Either you are released right away or kept all day long as jury selection trudges forward.

So a little known secret. I love jury duty! Seriously, I think jury duty rocks! I have been on a jury and was picked to be the foreman! It took four days total and was very interesting. You really have no solid foundation for how our justice system works until you have been on a jury! But under my current circumstances it was not appealing at all. But I was there and would perform my civic duty regardless.

As a young gal stood at a podium reading names for group one and two, I secretly wished they’d call my name. I know I needed to be at Stanford, and as confusing as it is, I also knew I wanted to be on a jury, it’s kind of like the two biggest kids on the playground picking teams! You pray you are not one of the last two kids left with two captain’s arguing over which one of you sucks less! So I sat, listening to an alphabetic order, praying F would be for me! Well I ended up in group three. Bummer, the dreaded unknown!

Then something happened, they readjusted their numbers and just like that! I was headed to courtroom 208! Five minutes later they excused all alternate jurors! DAMNIT!!! I could not win! So I resigned myself to a possibility of four or five day’s jury duty. Sitting in the courtroom trying my hardest to listen to our judge I couldn’t focus! I kept thinking about my wife, laying there wondering when I would arrive. Then it was the kids, how will I get them where they need to be all week-long? But the final straw was when I realized I had no idea what the judge was saying! I had been sitting in the courtroom for 45 minutes and the only thing I remembered was raising my right hand to be sworn in! Also I had become overly stressed out over my phone being completely shut down! One of the rules of the courtroom! What if Jacy needed to reach me, or her mom or dad? There was no way I was going to be able to survive this and still care about the defendant’s right to a fair trial!

The judge asked at 1145 for all jurors who felt they had a valid hardship in conjunction with fulfilling their obligation to serve to please form a line outside. She also asked anyone who felt they would have an issue with serving to please raise their hand. 30 people raised hands, all grumbling as they did so. I did not. No way was I going to be a slacker! Good men and women have died for our freedoms and with those freedoms come the responsibility to fulfill our obligations. We Americans have one of the best judicial systems in the world. It may be flawed but it beats the hell out of being thrown in jail to rot with no rights at all! So this guy wasn’t going to be one of those guys! That’s right! Damn proud to be an American!!

11:45- The line is long. I am third from last.

Oh shut up! I hear y’all now grumbling about all that patriotic shit I just spewed! The long and the short of it? There was no way I was even close to being able to pay attention. As conflicting as it was for once it was about me, my needs, and the needs of my family. I was sorry for the defendant, but I didn’t put him there and my wife needed me! End of story!

Walking up to the podium, lump in my throat, I really did feel guilty. The judge was really awesome, from the beginning she was funny, with great dialogue! She reminded me of Judge Harry from the TV sitcom Night court!

I placed both hands on the podium looked up at her as she said hello. I shook my head (I think she could tell I was bothered by what I was about to do) and said: I feel guilty standing here right now.

Judge: I have that effect on people!

Everyone chuckled

Judge: What is your name for the record?

Me: James Franceschi

Judge: Go ahead Mr. Franceschi

Me: I didn’t raise my hand earlier and for that I am sorry but you see my wife, well my wife had a bone marrow transplant in July. This date today was my rescheduled summons, a date I picked because she was supposed to be home by now. She is not. She has had every ailment possible and continues to struggle through setbacks at Stanford hospital. Therefor I don’t believe I would be a good pick for this jury as my mind is obviously elsewhere.

Judge: family is the most important thing and should come first.

Me: Thank you, and please understand I am who you would want on a jury. Every time I am called I look forward to being picked and the last time I was here I was not only picked but the other jurors picked me to be the jury foreman as well! I had an amazing experience serving as a juror.

Judge: Thank you for your service Mr. Franceschi and let’s just say this ones on me! Your service here is complete and thank you again. The court wishes the best to you and your wife.

Me: Thank you judge

As I walked from the podium I heard the judge say thank you again and that she wished others could have heard my testimony. Slightly embarrassed, I quietly said thank you again and after a moment with the bailiff I was on my way. I hope one day I am called again and it is in her courtroom so I can be a part of her machine. I am sure anyone who serves under this judge comes away with a smile.

Two hours later I was with my wife. When I am with her my blood pressure drops, my head stops hurting a little, my heart beats a little slower, my smile grows a little larger.

I busted Jacy out of her room for a stroll to the fountain. We found a shaded seat as she cannot be in the sun and even with a mask on her face I saw her smile through her eyes. The warm breeze upon her skin, the sound of water crashing down and a duck or two chatting away in the distance. It was amazing just being by her side, knowing it is, was and always will be where I am supposed to be.

After we had all the sun and fun we could stand, I rolled her back inside where she proceeded to walk not one, but two laps around the quad. This girl wants to go home and bad! Of course this left her exhausted and within a few minutes she was fast asleep holding my hand.

Two hours later the day was gone and I needed to say goodbye. I hate saying goodbye. I still hate walking out the door. But I do so knowing she is being taken care of by some of the best human beings I have had the privilege to meet. I love her and so do they. It shows every time I arrive and am greeted with a smile.

This week she is starting another experimental drug to help control her bleeding bladder. Please continue to pray for rapid healing as prolonged exposure to this drug can leave irreversible damage. But it is our only rational option. I say this because the other two options, the way I understand them would leave her either on dialysis for the rest of her life or incontinent.

A day that started out with possibly twelve angry men ended with one happy wife and one humbled husband who is always glad to have another opportunity to simply hold my wife’s hand..

jacys hand

The fight..

theycallmebetty5 Comments

She smiles whenever I walk through the door. Warm and happy, clapping her hands together with joy. As men and women we secretly hope our spouses are this happy to see us all the time, youth and a certain naivety lead us to these false hopes. We (husband and wife) eventually learn life will continually get in the way of how our relationships are portrayed within our imaginations. We have also learned over time that children, work, sports, school, social gatherings and general daily survival slowly tear down the very fabric our relationships were built upon when it was just the two of us.

Juuussst the two of us, we can make it if we tryyyyyy, just the two of us. You and I…

Sorry couldn’t help myself but C’MON!! You heard it too when I wrote it!!! Don’t shake your head no! You know it and I know it, you  heard it! Anyways….

Then Leukemia happens. It scares us to death! Just the sound of it. Leukemia. Yep it carries as much weight if not more than simply saying Cancer. Now we throw in remission, survival and cancer free. Re-lapse, Bone Marrow transplant, GvHD, success and failure statistics and well the emotional roller coaster of life and death drive you closer together. You begin to realize all the times you took each other for granted while expecting your relationship to never change or evolve. But it had changed. It had changed a lot. Of course nothing like you see on television, where there were secrets and you no longer spoke to each other. You know? Soap opera like stuff. No you both had settled into your roles as partners in this game of life. One handling the children’s education and transportation, the other handling finances, overtime work and building a future out of our property. The both of you sharing house and ranch duties, parenting, cooking, cleaning, laundry while you both try your hardest to equally dole out duties and discipline to our four ever needy children. Yes life can truly get in the way erasing the simpler times when you waited all day to see each other, then dreaded the moment you had to leave.

Every day I am home I cannot wait until I see her again. We don’t head out on a romantic date, no carriage rides, fancy dinners or moments alone in the park. Two people sitting sometimes quietly while the other sleeps, holding hands waiting for the next nurse to come in, ruining that moment of normalcy. I have said before I believe holding hands is the simplest form of compassion. These days it feels as though the nurse has walked in to interrupt us doing something we shouldn’t be, like teenagers hiding out in the barn. Yet we are simply holding hands, it is all we have.

6-7-8 hours within those four walls disappear in flash! I hate leaving! I hate leaving my girl behind! Walking out to the car I have learned to transform my emotions, change my demeanor, and count my blessings. For the easy road would be to remain angry at someone, anyone for what has happened to my wife. The once vibrant, larger than life woman has melted away to around 115-120 pounds depending on her water weight that day. Where toned tan legs once powered her successfully through a mini triathlon, two long bones remain, not one muscle in sight. Where long, gorgeous, curly hair rained down over her shoulders, a bald head remains. Her gleaming eyes and gorgeous face trying to peer out from under swelling and drug induced exhaustion. An athletic, active woman who rode horses and ran the perimeter of our property now worries about getting out of bed and walking a little farther down the hall every day. But I turn that all off as the building disappears behind my shoulders to focus on the positives.

She has beaten the odds so far and is still alive.

Jacy still has fight, lots of fight! Which is why she continues beating the odds! This woman, this beast wants to participate in double PT every day no matter how exhausted! Some days it doesn’t happen but she still tries! She continually defies nurses’ orders by getting up on her own to use the bathroom even though it is against protocol. Sitting in her chair for hours, sometimes all day as opposed to just staying in bed, waiting for things to change. Eating even though she has no desire to eat, drinking plenty of water and nutrition drinks which taste yucky. Using large rubber workout bands when she does stay in bed, hoping any little extra helps her to get home that much faster! Yep she is still fighting, like the angry Cuban stuck inside her, she is fighting and fighting hard!

So instead of moping on the way out the door, worrying about whether or not she will make it, I think about what and whom for which this daily battle rages. She fights first and foremost for her children, there is no doubt! Then she fights for her family and friends. She wants desperately to be there for all of your life changing events as a daughter, niece, aunt, mom and friend. It is what drives her forward when she begins feeling low.

Lastly she fights for herself, for you see she knows if there is no her, there is no me, and if there is no me, there is no her. Our love for each other has stood the test of time and will continue to do so. So she smiles when I come through the door, happy and giddy just to see me for a little while.

I sit down quietly, kiss her through all my hospital garb, and hold her hand. We smile, laugh, and talk. The hospital melts away for a few moments and I no longer see the woman waging war, but the soft, gentle, warm spirit I married 14 years ago.

We are winning……..

jacy stanford

Have we turned a corner?

theycallmebetty11 Comments

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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….

calvin_and_hobbes_wagon

Up the Hill, Down the Hill…….

theycallmebetty6 Comments

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Up the hill, down the hill, up the hill, down the hill, using this reference explains our current extended BMT journey. Jacy’s progress as of late seems to be in an upward progression! So while we are currently running on a high, lets catch up and see where we are in regards to her possibly leaving the hospital at some point.

Here are the facts as we know them and hopefully this answers many of the questions I received during this last week.

She is eating solid food!

This is a good thing! No let me rephrase, this is an excellent stage in her recovery! The GVHD (Graf vs Host Disease) attacked her intestines and is the gravest of stages in regards to GVHD.  To help better understand what that actually means let me explain. Your intestines are filled with cells and follicles.  These cells and follicles take all forms of matter both solid and liquid, absorb and convert them into usable nutrients leaving any waste behind.  With GVHD your white cells (the new immune system) are working great, but they still dont quite recognize their new home. So whats a scared white cell to do? Well they form up and attack anything that freaks them out! Even with immunosuppression on board, these little buggers do a number on your system.  In this case her immune system attacked the cells and follicles inside her intestines, leaving her intestines looking a bit more like a solid PVC pipe. Smooth and clean.  Problem? She can no longer digest food, and if any food is introduced she will automatically bloat,  causing intense pain and constant diarrhea.

The Jakafi combined with steroids hopefully will allow her body time to regenerate new cells thus her new immune system will identify them as their own this being the only cure.  So eating solid food, albeit noodles, chicken stock or poached chicken is a sign we may be heading in the right direction.

She still cannot see.

Her eyesight is poor, very poor. Jacy’s eyes may clear up just enough to recognize someone for a short period of time, but for the most part it remains nothing more than a fuzzy white haze. This problem is derived from a combination of issues revolving around prolonged use of steroids, aconstant need for Lasix to control excessive fluid buildup brought forth from a mirage of IV’s she receives every day keeping her alive and drug induced diabetes. This issue is temporary (after 6 weeks now it feels like permanent to her) it will resolve itself over time.  We also understand she will have some form of permanent damage to her eyes.  This could be vision acuity issues; issues with her tear ducts, or both. She is going a bit stir crazy not being able to watch TV, more specifically Naked and Afraid!

She has developed diabetes.

Another issue being closely monitored as I slightly mentioned above. Drug/GVHD induced diabetes. In most cases this is a temporary side effect. It comes from your body’s inability to process anything thanks to GVHD. By having your nutrition constantly fed to you via IV against the wishes of an already pissed of immune system certain things happen and this just happens to be one of those side effects.  This is also temporary as the body begins to realign itself with a functioning digestive tract thus working more efficiently while producing a proper amount of insulin to help with nutrition processing.

She has massive muscle loss.

We all know and remember the Jacy who could teach two spin classes a day and sub for you in the evening if need be? Well those days are going to be over for a while; steroids are a nasty little business! Jacy has been bed ridden and in combination with all the medications including a massive continued dose of steroids, well there is nothing left. Jacy’s body has been reduced to half her size.  But here is the good part. IT IS JACY!!! Anyone who knows my wife, knows there is no way in hell she is going to stay down for long! Apparently her need to walk, move or exercise in any way forced staff to put her back on a bed alarm or pin her to her chair when ever she gets out of bed to sit upright for a while. She called me yesterday and with her best controlled Cuban temper explained in great detail that she is tired of being treated like a child! In her words: If I want to walk or get out of bed to pee gosh darn it I should be able to, right? RIGHT????

Yep that’s our girl, suck it GVHD, you dont know who you are messing with!!! Later that evening she called again to let me know her and George (nursing assistant) walked the entire quad. She was feeling pretty proud of herself and she should considering last week at this time she could barely move!

She has a bleeding bladder.

Jacy’s bladder has been bleeding since the transplant.  A side effect from some of the medications, it soon transitioned into an infection.  This little booger is tricky, as an infection it is to be treated treated with steroids and antibiotics. Some of these medications dont mix well with others, and Jackafi itself presents a new slew of challenges. Some medications make her blood clot, others will make her bladder spasm and then throw in Lasix creating a constant need for urination and her urinary tract becomes further irritated.  She could have a catheter placed but there is further risk of infection which we just can’t have right now. Another side effect becomes since she is losing blood constantly, she needs repeated transfusions of blood, or just platelets, either way, there is constant discomfort from these ongoing issues.

How is she being treated for GVHD?

There is a myriad of drugs being used to treat GVHD including what I have mentioned previously such as steroids, immunosupressors and the Jakafi. But she is also receiving Photopheresis. What is Photopheresis you ask? I found this little clip from the Cleveland clinic which I feel describes it best.

What is photopheresis?
Photopheresis or extracorporeal photoimmune therapy is a procedure that might be recommended by your doctor to prevent or to treat graft versus host disease (GvHD). This procedure offers another way to try to suppress the donor lymphocytes (type of white blood cells) that stimulate immune reactions and aid in the development of GvHD.

How long does the procedure last?
The photopheresis process lasts about 3 to 4 hours. You might require several photopheresis sessions before the desired results are achieved. Your doctor will develop an individual treatment plan for you based on your disease.

How is photopheresis done?
During photopheresis, blood is taken from one lumen of your central venous catheter and processed through a cell separation machine. This machine removes and treats your lymphocytes and then returns them and the rest of your blood through a different lumen in your central venous catheter.

When your blood first enters the machine, it is mixed with an anticoagulant medicine to prevent it from clotting. Then, the cell separation machine collects the lymphocytes from your blood and mixes them with the drug 8-methoxypsoralen or UVADEX. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The lymphocytes and UVADEX are next exposed to ultraviolet A light inside the machine. Lastly, the lymphocytes and the rest of your blood are re-infused to you through another lumen in your catheter.

How can this procedure help me?
By treating your lymphocytes during photopheresis, their function is altered. When the treated lymphocytes are re-infused, they will stimulate an immune response in your body to fight the development or progression of GvHD. Your doctor might use photopheresis alone or in combination with other treatments.

Everyday is filled with tests, procedures, blood draws, medications, and more. To say I think she is the strongest woman alive is an understatement. Of course there may be a bit of favoritism.

How long until she becomes an out patient?

We still dont know. Our families met with her new doctor on rotation last week. His main goal is to keep her going and hopefully we see a change. She is walking a line right now and the team’s goal is carefully assisting her by balancing all treatments and procedures without upsetting that balance.  She is being weaned down a tad from the steroids in hopes her body picks up the slack and begins to strengthen. So far it is working perfectly. Our main goal during treatment remains the same. NO INFECTIONS! One small infection could upset everything and we could be back to square one quickly.

Once Jacy is able to process solid food on her own 100% we know outpatient care is not far behind.  So far she has beaten all odds stacked against her! (as if any of us thought differently) And she struggles some days to stay positive but for the most part it is one day at a time and if she makes any physical progress (sitting for an extended period of time or walking) she feels like she is winning! This of course propels her into the next day!

She loves the cards, letters and prayers, they keep her smiling.  (We all know that smile, if you have forgotten look no further than the top of the page, it why I picked that picture) She understands each and every one of you are thinking of her, praying for her and feels that love all the way at Stanford.

Personally I remain stunned, and so very thankful for all the help we have been receiving. The generosity of so many is a bit hard to comprehend at times. We are just like any other family who has good days and bad. This community has gone way beyond for ours, I pray daily for the ability to handle it all, to keep a positive outlook, to stay open to all forms of assistance (something I am not good at) and to not let this tornado of a life overwhelm me. I also pray for those going through the very same struggles, both personally and for those they know, for you see something like this doesn’t just affect those stricken, it affect their families, friends and co-workers as well. And with that I am saying I pray for all of you.

We have but one, life, how we choose to live, behave and respond rests solely on us as humans and within our beliefs.

I believe in having faith.

Love to you all~ Betty