Category: Children

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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When a mullet is more than a mullet.

theycallmebetty6 Comments

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It came from my mouth like venom through a snakes bite. Over and over again I struck, not just during one opportunity but through countless encounters. My victim continually wandering into my lair, setting himself up for attack, never backing away but every now and again wincing just a little. It was cruel and at first unintentional, but intentions can change with the wind, leaving the recipient wondering what the hell. Soon every attack had intention and meaning, usually in front of others as if it made me a better person for calling out my victims perceived flaws. It didn’t. My strikes were evil, demeaning and showed that I was nothing more than a full-grown bully. Others would join in and like a pack of hungry dogs we feasted upon our victim’s distress. Gnawing, tearing away at his very fabric, and never once thinking about the consequences or where it may leave him emotionally. All in the name of the past, our perception and what we felt was humorous.

Last night, awake, staring at the ceiling, my mind raced over the last few months and how hard it’s been for me to keep mentally strong. Focusing directly on each child’s needs, where I may have succeeded and where I have failed. Wondering about the future and what it holds for this family I continue trying to plan the next step. Our children will need their father to be overly understanding as emotions are high. My game needs to be spot on as to not let them get away with things they shouldn’t all while easing up just a bit allowing them to feel whatever emotions they feel in regards to their mothers absence.

My daughter and 15-year-old son have presented the largest challenge.

Parker knows who he is and is very comfortable with himself. He tells you how he feels and makes no bones about you overreacting to any portion of his mental/physical/educational progress. His mind in some areas is a bit regressed while in others he is wise beyond his little 10 year old years. Lately though school has been a significant challenge for him. Myself, the school and a dear friend who has been assisting him at home have all come up with a solid game plan to keep him in play. We want him to rodeo badly as we think it will be a good distraction and it is after all what we do as a family. He wants nothing to do with rodeo and fights us at every corner. Frustrating to say the least.

Jessica my 11 year old daughter is coming into her own. Straight A student who always strives to please. She is currently expressing herself by being defiant, to everything, and I mean EVERYTHING! She has a problem controlling her weight, it is a giant burden for her that she takes very seriously. Since mom has gone back into the hospital and been gone for these four months I recently found she is sneaking food at night again. A sort of coping mechanism for her emotional status. She hides the food out of fear. Fear that she will get in trouble for eating after hours. There was a time when this was a huge issue in our family and we even went as far as building caged doors for our pantry to keep not just her but all our little vultures from eating us out of house and home. She is struggling hard, not just with the eating, but back talking, arguing, and picking fights like a drunken sailor with only hours left on shore leave! Somedays she marches around with her fists all balled up and you just know, like a back alley brawl it’s about to go DOWN!

Our rodeo cowboy Jake has also been “bucking” (see how I did that?) the system as well! He hits everyday toes turned out, hand locked tight ready to turn out and hit it hard. More times than not he hits the dirt hard, but the boy saddles up and just keeps trying. Jake too has been working at finding his place amongst all of this family drama. He carries a lot of responsibility when it comes to the ranch and he is such a large man sized boy I often forget he is just that; a boy. He struggles with his grades, constantly. He is also struggling to make the right decisions when it comes to friends and after school extra-curricular activities. We have all been there and I think it’s why we want better for our children. I have made no secret about my past, about my high school experience. I chose the easier way out and I need them to learn from those mistakes. Taking the easy way out put me close to ten years behind in life. Unfortunatley like his father he has this need to experience things, to learn the hard way, and it scares the shit out of me. We have been butting heads very hard over the last few weeks to a point I feel like we were going nowhere. Lately besides grades, his behavior and his decisions when presented with an opportunity to run astray with his friends have not been good. I have also been riding him pretty hard about his new, old school hairstyle. Emotionally he looks like a beat dog.

So here is where I am going with this whole thing.

Today as we are preparing for a family visit with Ms. Jacy my gander hit the fridge. There upon it is 20 or so pictures of our family from over the last two years. Do you know what I saw? Our kids, our happy well adjusted, personable children. Smiles on their faces, hugging their bald mom, laughing with each other, holding up trophy buckles, works of art, hugging the dogs, yes the dogs are family too! Our children that I spent all night worrying about how I was doing as a father all looked ok. Each one showed their own style! Their own version of who they are at the very moment a shutter froze them in time. I saw four individuals, four young people choosing their own paths regardless of anyone else’s wishes and doing it with confidence. It was an amazing moment filling my heart with joy! But you know what stuck out the most? Jakes mullet.

Jakes mullet stuck out like a white flag waving from the trenches! Telling me it was time for me to wave that flag, surrender and ask forgiveness. For you see each one of our kids has something I constantly pick at, like a good parent should! You know, a slight course adjustment or suggestion to help them understand they aren’t fitting into a classification, a social mold if you will. A couple of things dawned on me in that very moment. One, why should our children fit into any classification? Are we not supposed to allow them a certain freedom to find out who they really are? If that means some heartbreak now and again then so be it! It will teach them how to handle themselves in tough emotionally charged situations. And two, no matter the other out of the norm issues I had in fact been particularly hard on Jake and for what? A chosen hairstyle?

When Parker said no to rodeo, claimed art as his thing and took to ditching a ball cap in favor of a flat brimmed drivers cap making him appear very artsy in deed, did I scoff at the notion? Hell no! In fact it is 100 percent ok that he hates rodeo, horses and all that goes with it. That is his choice. He has tried it, given it a good go and ended up in the hospital a few times! Trust me his thought process may change at some point and if it doesn’t so be it! That’s who he is, we love him for it and by the way the kid is very creative! His art shows a caring heart, personality and great love for all things.

When Jessica started stealing food from downstairs to hide in her bedroom. Eating at all times of the night even though we spent countless hours chastising her for such behavior did I freak out? Well YES I freaked out! I freaked the hell out! Worried my daughter’s weight issues would expand, she would be uncomfortable with herself and have huge body issues as the result of bullying! But somewhere along the line I realized the problem was not all her, part of the blame was us, more importantly me. So I pulled her aside and let her know it was ok to eat. If she felt hungry, just eat, take what you want and eat it. My only rule? Let me know you are going to eat so I can approve it or find you an alternative. She looked shocked as though the words coming from my mouth were some form of cruel joke! But nothing shocked her more than when I told her as long she is comfortable with herself, as long as she can look in the mirror and love herself for who she is, then who cares what anyone else thinks. My job is to educate you, help you make the right choices and hope you come away a strong and confident woman. If that strong and confident woman is what society deems as overweight or out of the norm then tough shit! I told her I loved her and gave her a hug. She left with a huge smile.

One thing I have repeatedly told all my children is find who you are, embrace it, make the most of it, discovery is how you find yourself so that when you are an adult you can be happy with the person you have become and you will never shrug off reinventing yourself. Yet here I was tearing apart those very values by continually ridiculing, mocking, terrorizing and just plain bullying my son over a stupid haircut! Now let’s be frank, the mullet is hands down in my opinion the dumbest looking haircut around, conjuring up images of Billy Ray Cyrus in two sizes to small faded jeans jumping around like an idiot! But that’s just it, it is my “achy breaky” image of what that haircut means to me. To him it represents several of his rodeo heroes, men he looks up too, that he wishes to emulate! I am sorry that just isn’t a bad thing and if it is what defines him as a person right here, right now, then so be it! This is how he takes those words of advice and runs with them, learning, crafting and molding the person he wishes to become! Somewhere I lost that, somewhere I felt it was ok to tear him down over and over again. On the fridge there was a card with a picture of him with both long and short hair. You know what? He is the same kid! The kid I love for who he is, not what his damn hair looks like. Today I sent him this text.

“Hey, just wanted to tell you something that’s on my mind. I know things have been rough lately between us, I hope you are learning from each encounter as I am learning from them as a father. I believe you are trying your hardest in school so don’t let yourself down. Continue to strive to always be a little better for yourself, not for me. I realized today I need to lay off you about that damn mullet. I have spent my whole adult/fatherly life preaching to you kids to be your own person and yet I contradict myself by giving you crap! If that hairstyle defines you right now then so be it! I apologize for all the grief I have given you. I am proud of you for being comfortable with who you are and that is one of the most important things for any young man to achieve. Keep up the good work, have a fantastic day, I love you…”

He replied by saying thanks dad, it’s just a rodeo thing and I don’t care about the mullet grief. I am working hard on my grades and I love you too.

Maybe it was just me.

So bring back the mullet son, business in the front, party in the rear! Either way, a mullet, a few well-placed photographs, and a sleepless night all combined so I could learn when fatherhood crosses the line into parental bullying, ending with the discovery that your child, hell your children are really doing just fine…

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

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

Oh? One of those calls….

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OLYMPUS DIGITAL CAMERA
Why must you ring? Why?

One of “those” calls, the phone call we all dread.

We all know the story, have heard it recounted a million times whether through a friend or family, on television or in the movies. This haunting recollection is always recounted like an old wives tale and for some strange reason it chills even more so simply through its timing. Midnight to 5am.

The phone rings, its 4am. Nothing good comes from a phone call at 4am. No one I know lives on the other side of this big round world just waiting to chat my night away, no one I know has been counting down the minutes to converse with me during what would be considered to any other normal human being, bedtime? No one. Not one, single, solitary person.

So that means when the phone rings at 4am it is without a doubt bad news, it always means at 4am that it is bad news. Right? Publishers Clearing house is not calling to inform me I just won 10 million dollars at 4am! Although they could, seriously PCH call anytime, PLEASE!!!!!

It rings, I don’t hear it. Sound asleep, weary from a long emotionally charged week my body is in deep REM sleep. Somewhere in my dream there is an apparition yelling at me to arise, screaming to wake up, something is not right! I wearily crack an eye to a very dark bedroom only to recognize the sound of a voicemail populating my electronic gadget of life.

Heart rate doubles instantly like an electric shock, as though the bell has just gone off at the fire station and I hear the words “Structure Fire”. Bam! I am awake! Searching fumbling for the phone, fear instantly grips me, thoughts, horrible thoughts of what may be; enter my brain! They keep coming as my fingers can’t quite grasp this stupid phone! Nothing is working! Squinting hard, no recognition is working and I can’t find my damn glasses to see since my fear induced jolt knocked them off the nightstand. Like Ralphy from a Christmas story I carefully search the floor praying I don’t take a misstep thus hearing the cracking of a shattering lens.

I have them! I can see, hitting voicemail a somber, I am guessing through dialect Asian gentlemen calmly explains Jacy has been moved to ICU. Her O2 saturation is poor, her breathing is labored, her red cells are down and she is in need of one on one care. If I have any questions to call.

Thank God! She is still ok!

I lay down for a moment to stare at the ceiling.

Once the emotions are out of my system, my heart rate has returned to normal and I’m done being scared, a thought crosses my mind. Why? Why does a late night call always bring the worst instantaneously from our subconscious? I know history, tales of woe and an assumed perception of the worst has everything to do with it. But I just wish there was a way I could shake that thought process from my mind. Anywhoo, this is how my week was to begin, with a single, heightened, middle of the early morning phone call.

After arriving to the hospital, doctors announce she had contracted a form of pneumonia giving her grief which explained why her breathing had been so labored. Her doctors said the GVHD was still responding well to the experimental drug Jakafi and their hopes remained positive as far as continuing to slowly wean her from all steroids which would help with her continued muscle deterioration. She has recently developed diabetes which is being treated accordingly and is also one piece of the picture in regards to her continued loss of vision. On Wednesday she participated in a bronchoscopy which did not make our girl happy at all, having a camera shoved down your throat when you have no strength to fight left her feeling a bit more helpless. By Thursday for some reason she had reverted completely and was back to feeling a failure in her recovery. She needed all our love and care to snap her back into her super woman fighting spirit!

I contracted some form of a cold and have not been able to see her which has been difficult to say the least. It is hard when the woman you love wants you with her more than anything and there is nothing you can do but stay on top of your medications and pray this stupid cold goes away quickly.

She wants to come home, it is all she thinks about! She wants to see her children, to hold them to watch them, to simply sit down and do homework, participate in their lives. On days she feels like quitting all it takes is reminding her what’s waiting for her at home and we can usually snap her out of a funk.

As of today Jacy is doing much better. This incident happened on Tuesday morning and although there have been a few bumps in the road for the most part she has held her own. The tests came back from the bronchoscopy and she has HVV6 a herpes virus we all carry to some extent, it masks itself in a few ways including pneumonia. Good news is she was already being treated with the appropriate medications so a minor adjustment and we shall see in a week. Jacy can no longer walk as her muscles have finally weakened. She still has limited use of her eyes which has been the hardest on her. She works very hard at staying mentally strong which after 67 days can be a bit daunting for a person who is used to doing everything for herself. Thanks to the help of her family she can sit in a chair for about 45 minutes without assistance, she is participating in physical therapy daily which includes the use of bands giving her muscles some resistance. She recently was placed on a special air mattress to help with her bed sores. She is seriously one tough cookie and my hero.

Our family thanks everyone who continues to pray, help, and care. She is the light of our lives, the toughest woman I know and she will come home. It just may be a while..

Hopefully I don’t get another one of “those” calls…

12:11 Sunday: Just in as I place the final touches on this latest edition!! HVV6 responding well, her lungs are clearing up! She is off oxygen and finally saturating in the high 90’s on her own. She has also been moved from liquids restrictions and will be able to consume fluids which means solid foods are not far behind!

Keep those prayers coming, she needs prayers of strength to help her mentally feel like she is improving, keeping her spirits high!

And away they go!

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I have spent the better part of the evening reading each and every emotionally charged snippet about children heading off to college. I went back and re-read what I wrote about Cody leaving last year on my blog and found myself choked up all over again.
To every one of you feeling the pain of having to say goodbye tomorrow or the next day or next week understand this; yes it hurts, it is going to hurt, there is no way around the pain of watching your child walk out the door alone. Yes it is a good thing, you have done your job it is time for them to shine! No you don’t have to be happy about it, no matter what anyone says to you, this is your child, your emotions, let those emotions flow freely, you have earned it!  Yes you are going to miss them terribly along with their dirty laundry, snarky comments, goof ball friends and most importantly you are going to miss just sitting with them sometimes not saying anything at all. It is hard not knowing what they are doing or how they are feeling along with  constantly wondering if they are safe,  after all that has been part of your existence for the last 18 years! But in the back of your mind you know you have done your job, so trust me it will be ok. These children or now young adults no matter how we may perceive them are the very best part of us heading out to make their marks upon this world and that is a good thing. They will come home and they will leave again, but know this, each time they come home they will be a little different, a little wiser, a little more educated, and a little more like the adult you always hoped and dreamed they would become. So while you are grabbing for tissue to sop up the misery, take your free hand and pat yourself on the back for the best my friends is yet to come! I promise!

Buckle up Buttercup!

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Timidly pullIng down the strap, buckling in tight, yes my nerves are raw, emotions high but with a feeling of optimism coursing through my veins. I knew this was going to be a hell of a ride, after all I had done my homework, read the memo’s and calculated all risks associated with this procedure. Life is filled with the unexplained, the where’s and whys, but life can also be explained through formulas, numbers, and equations the basis of fact.

In my world I live on a combination of hard facts and grey areas derived through trial and error, or accumulated experiences. Some days bring solid steadfast results, other days bring gloom and despair but mostly we consistently work within that grey area of operations, teetering between facts and gut reactions. There is something to be said about going with your gut! While floating in the cranial membrane of greyish indecision it has always worked well for me.

So today whilst arriving at Stanford to meet with Jacy’s primary doctor, I really had no questions as through many days and nights absorbing information, regurgitating said information for consumption and pondering the wealth of answers in regards to my wife’s previous, current and future care I felt fairly certain I was right where I wanted to be mentally. Oh but how doctors love hard facts….

Buckle up buttercup this is going to be one hell of a ride!

That’s all that kept running through my head..

Sitting in a room specially designed for such occasions I actually began to feel a bit nervous. I have been here before and I never really like these meetings. It is probably the basis for my need to overload on information, know everything that is happening so as to never be caught off guard. The room was filled with Jacy’s dad, step-mom and myself seated across a table from the doc, his assistant and a social worker. Jacy’s primary nurse joined us a few moment later quietly standing over my right shoulder. For the next 20-25 minutes this room reverberated with every question a father could think of in regards to his daughters care. In return every explanation the doctor felt needed to be tossed onto the table and a few that were beyond what I expected were pitched as well. Once the percentages began flying around my nerves just went numb! 20% here, 70% there, combined with scary words like mortality, fragile state, and the ever popular response of “we just don’t know”. There were also positive words such as, fighter, strong, stubborn and holding her own. Many detailed analysis I already understood; some analysis I was vaguely aware of and had appropriately deduced an outcome, while every now and again something would be said that just blindsided me. But I suppose that was to be expected for no matter how much you prepare you cannot possibly know everything. As we concluded it felt as though we all walked away understanding a little more about the who, what, where and the why of it all. I also walked away with the utmost respect for her doctor and every ounce of care she was receiving.

Now I have long said that statistics are to a mathematician what a lamp-post is to a drunk; just something to lean on.

But driving home after weeks of feeling super positive (well except for our girls little outburst last Friday that sent me into a tailspin) and feeling as though my understanding of everything was solid; driving home I felt, well, I felt heartbroken. A feeling I had no inclination of participating in, yet there it was, like my chest was going to break open! Just plain old heart-broken. Part of me wishes I had never gone to that meeting, part of me wishes I didn’t understand all that I do, part of me wishes I was just a stupid, sheep of a husband, one who nods his head yes and no whenever questions are asked. All of me wishes I could tap in for my wife, trade places with her, send her home. I have known this was going to be a long rough road, I have known that from the start. It just got longer and rougher. I have always known my wife was a fighter, she is the toughest woman I know, but she is going to have to get tougher. We are no longer talking in weeks, we are talking in months. She misses her home, her life, her ranch, her children, heck even her husband! I miss her terribly at home and all of this is breaking my heart.

The good news is these doctors know she is a fighter, everyone loves her, and the nurses all look forward to working with her. Jacy’s spirits are soaring and she knows deep inside her soul she is going to win! GVHD is no joke it is life threatening, but her toughness, her tenacity to continually do the opposite of what is expected through statistics, that will power is what keeps her going strong.

To date; Jacy cannot see due to deteriorating optical nerves in conjunction with sloughing of inner eyelid tissue, so today they tried several experimental procedures hoping to alleviate some of her visual discomfort including placing an amniotic sac over the open eyeball. Do you think that stopped her from getting out of bed and walking with me this evening? Hell no! Her eyes burn, her skin burns, she has broken blisters and peeling over her entire body! You think she whimpered once about how uncomfortable it was or used it as an excuse to get out of physical therapy? Hell no! Her stomach is upset, she cannot eat solid food because the GVHD has extended to her intestines leaving her only induced nutrition arriving through an IV. Do you think that has kept her from downing chicken soup whenever possible? Hell no! Jacy’s all over body pain is so intense she is attached to a pump delivering morphine every 15 minutes just to get through the day. Do you think that stopped her from greeting every nurse, janitor, doctor or visitor with a beaming smile, telling them what a good job they are doing, or talking about television shows, laughing together like old friends? Hell no! She can barely talk at times due to severe dry mouth and lesions inside her throat. Do think that has stopped her from happily conversing with each and every person who crosses her path? Ok I know you know the answer to this by now!

Her enduring strength, positive attitude and indelible spirit are what’s keeping this mother of four, teacher, daughter and friend going strong. I also believe some faith is in there as well. Please keep her in your heart, she believes in all of you and says she can feel the power of prayer working every day.

We have a hill to climb, it is going to be long, sometimes really hard, bumpy and frustrating, but when you feel those helping hands of spirit and faith pushing you from behind you can’t help but make that final push over the top. Then buckled up, straps down tight we can finally let go of the bar, place our hand up high and enjoy the ride together.

stay positiive

Gonna pump you up!

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hanz and franz

We are going to PUMP YOU UP!!!

Fighting Leukemia is a long hard battle not for the faint of heart. These men and women struggle with more pain, both mental and physical than anyone could imagine. Their continued inner conflict seem to come from the heart because no person wants to go through something like this! Once you read all the information you then have questions, doubts and wonder why exactly someone would put themselves through endless hours of physical and mental highs and lows. But they selflessly do.

Believe me, these patients don’t do it for themselves! I have listened to a few survivors now, both in conversation and as part of this wonderful network slowly being formed through contact both on this page and other media sources. Each of them all believe saying yes to life was the right thing to do, the responsible thing to do; having treatment was a choice and they all believe they’ve made the right choice. But??

Of the four I am currently chatting with online, each one slips into a sentence these words: I am not sure I will do it again. Or the ONLY reason I went through it all was for my family.

Think about that for a moment. I have been faced with serious choices over the last 20 years in regards to others, and I always tried my hardest to make a decision based on training and what I would want someone to do for my loved one. Never in my wildest dreams did I ever think; what if it was me? What if I needed treatment and without that treatment I may perish?

These loving, kind, vibrant individuals faced with an option, treatment with a 50/50 chance or no treatment and let nature take its course eventually leaving behind loving family and friends. It boggles my mind.

I am overwhelming thankful for the choice my wife made. She was rocky for a minute, but it was only a minute and then her normal, lets kick this things ass mentality shifted into overdrive. I am grateful the people I have met who have survived not just Leukemia but all forms of cancer made that choice letting modern medicine have a shot! I am thankful for where we are in the advancement of treatments for all kinds of cancers, because 20 years ago the outcome would have been very different.

These people are my heroes, I am honored to know them, to talk with them and hear the love, kindness and respect they hold for a new found life. Some are completely different than before, nothing bothers them, and they no longer get upset over the little stuff, waiting for each and every day to greet them with the sunrise. Others hold a new respect for their surroundings, knowing if they hadn’t made that choice how much different things would be today. All of them are grateful for their families, loved ones and friends.

Each one of them is open and honest about their struggles, willing to share feelings both positive and negative, hoping I see in the end it will all be ok. Writing about Leukemia as it decimates a loved one is filled with negatives, it just cannot be helped. But there are positives and these people prove that to be so!

To each and every person battling to live, for your family, your friends, your loved ones, I love you all, I will always share your stories of inspiration to hopefully help another father, husband, friend such as myself. You all make me proud to be who I am, what I am and where I am right now with this life.

With that, I believe it is time we update the wife’s condition.

Wednesday, things were very rough! Jacy still couldn’t walk, pain everywhere throughout her lower extremities. The fevers had returned with vengeance, and vomiting appeared to be an every 30 minute abdominal workout. The doctors pulled her Hickman line for fear of infection and placed a Picc line in its place. She was still heavy on fluids, and any effort to urinate (which was a must every 10-15 minutes) was met with burning pain and small abdominal spasms. When I left her on Wednesday night because I was headed home due to a large fire near our jurisdiction, she was knocked out from pain meds.

Friday I snuck over in the afternoon and Jacy had been moved into the cardiac unit. Fevers were running high without rescinding, she was still vomiting a lot, and her lungs weren’t exchanging oxygen well so O2 saturation levels were very low. She was also diagnosed with HHV6-B

HHV-6B primary infection is the cause of the common childhood illness exanthema subitum (also known as roseola infantum or sixth disease). Additionally, HHV-6B reactivation is common in transplant recipients, which can cause several clinical manifestations such as encephalitis, bone marrow suppression and pneumonitis.[5]

Sooooo cloth gowns, masks and gloves for everyone!!! SCARYYYYYYYY!!!!!

I know you are asking yourselves; hey! Didn’t the title say “we are going to pump you up”? This has all been kind of a downer!

Well MY PEEPS! Word on the street is Jacy was slipped a little steroid cocktail and BAM! Instantly feeling better! That’s right within a day her fevers had subsided and by the end of the next day she could walk the quad without pain!!!! Whoop whoop!

roids

Jacy was moved from the cardiac unit yesterday and once again is blessed to have her very own room. (A luxury I might add). The doctors ran a bunch of tests today which included a colonoscopy and she still has plenty of sores in her throat along with a full body rash. Doctors have stated they are trying their hardest to get everything under control so she may be released to outpatient care hopefully by the weekend!! Way to go Steroids!!!!

Getting her out of there and into the redwood lined, mountainous retreat that is her father’s place will be a spirit builder for certain.

So after a very long storm the first bit of sunlight comes cracking through the clouds and hopefully we will feel the warmth of her smile once again.

When angels cry

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Today I felt a sound;  piercing silence with destitute angst, grasping upon fibers of resolution with no sustenance for carrying such weight. Fear, exhaustion, sadness, weariness, exasperation; the last few exhales of a frail and emotionally barren patient who feels as though one more night without resolution may become one night too many.

I felt it! I didn’t hear this sound, although my hearing is just fine as human beings we carefully and most often selectively choose what we hear and when. Yet every now and again it is more.

While on the beach we hear waves yet I feel deep in my chest their mighty power swell, withdraw and swell again crashing onto the pummeled earth we know as sand.

Riding my horse, any horse; I can hear the animal breathing hard leading me to know she is working, but what I feel is so much more. Tightening, relaxing, stride reaching or falling short, flex, give, kindness, frustration and freedom. I carefully feel deep inside what I hear leaving me satisfied or yearning for more.

My child hugs me and says I love you daddy, but what I feel inside is warmth, love, caring need, want, respect and knowledge that this being was not only the very best decision made in my life but, I will always love them exactly the same way long after I am gone.

So when my wife calls me this morning quietly whimpering, leaving me struggling to understand what she is trying to say. I feel that.  Through calm patience allowing her to gather enough breath only to break apart, crumbling into tears because its been a long night with no sleep, excruciating pain, another fever, and a new inability to adequately exchange oxygen within her lungs. I let her cry.

I don’t hear her cry, I feel it.

Phrases like: I am done, this is all I can take, I just want to go home, spew forward with no resolution.  I can’t take the pain any longer, I feel broken, I’m never getting outta here, I am scared, so very scared!  All spew unabated from her raspy, quivering vocal chords.

I feel it deeper.

My throat is tight, yet I can’t let her know, my stomach hurts so quietly away from the receiver I take calculated precise breaths to not let her know my heart is breaking.

Because I no longer hear her words but feel her pain.

Today they are doing a procedure to extract a portion of her lung for testing.  She does not have adequate oxygen flowing through her system and they are concerned as to why.  Her white cells are there, they are multiplying, they are accepting their new home. She has a fever that will not go away, vomiting has not ceased, fluid retention stays the same and with each and everyday she feels her road to normalcy slipping away.

Two days ago she felt good, we all  felt positive, but for some reason two steps forward continue to multiply into three steps back. Like climbing a mud slicked hillside or traversing through a severe rain storm. This journey was never promised to be easy, it was explained to us in very plain English it may be a rough road.  Since we have been at Stanford I have personally witnessed people walk out, ready for the next phase.

I know there is hope, I feel it without so much as a word spoken.

Yet it is not me suffering through each day, I am not staring at the same four walls, no big blue curtain surrounds me or leaves minimal privacy as my body aches to urinate every five minutes. My life is not surrounded by nurses or inundated with endless needle sticks, buzzing, chirping squealing machines. At no time do I feel like screaming from boredom just to hear something other than the television.  When I arise in the morning my legs work, I stand just fine, without assistance. There is no button to push asking for help or more IV pain meds, no pills to swallow every four hours, no reciting my name, birthday and address for security purposes every time a medication is given. I don’t need strangers helping me to shower, cleaning up after me or wiping my backside when things go sideways.  Every morning a group of attending’s with their mentor does not surround my half-naked body staring and talking as though I am not there unless a learning moment needs explanation. Oh they are nice enough, friendly smiles and all yet it is not in my wheel house.

All of this happens everyday for my wife, my feelings are positive, I know it is all going to turn out ok, I feel it.

I hear her desperation, I hear her cries for help, I hear her pains, wants and wishes.

But when my wife calls saying she’s done; I cannot hear that, I can only close my eyes and feel an angels pain.

How “we” are doing.

theycallmebetty3 Comments

Unknown-2This arduous journey we are on is filled with inevitable highs and lows. People are always asking how “we” are doing and although for the most part I am fine; I cannot hide my feelings of attrition while aimlessly wondering through each and every day. Work is merely a blessed escape, a place to hide from reality as we move hour by hour towards resolve. Home leaves me running around trying to appease everyone while getting absolutely nothing done in the process. The carnage left behind I fear to be my children. Although showing no signs of weakness along with praising my personal efforts whenever we check in at night, I often ponder what their reflection of this moment will become years from now. Will their recollections be filled with bravery, honesty, and fondness for a valiant effort put forth by many loving, caring friends and family? A summer filled with day trips, adventures and playtime accompanied by freedom from parental rule? Or will they only remember a summer where no mother or father were present a majority of the time? Night after night of no one to kiss them goodnight, tell them how very proud we were of any small accomplishment casually swept under the rug through absence? I wonder, my heart hurts, and panic grips my thoughts as I have no control over any situation they may find themselves. Or maybe I am just thinking too much?

My oldest is doing a great job, the kids are constantly singing the praises of super, duper big brother Cody; it does bring me some comfort in the man he has become. But day after day I smile, I hold strong, and act like nothing is happening for the only ability I hold to express any feelings resonates within the stroke of a key. It is probably nothing, my uncontrolled daydreams of disaster happening without me present, strung together from the woven fabric of a long storied career, centered on assisting others during disaster. For my spinning, crazy mind the boogie man hides around every corner waiting to spring into action. He prays on the weak and unattended, and although my oldest is an adult with more than adequate skills to handle any trouble that may arise, through my eyes he is ten years old with a squeaky voice asking for my help and I am not there.

I miss my wife, I miss my friend, and I even miss her being terse with me for something stupid that has sprung callously from my mouth. (which if you know me is frequent)  I miss her kiss. Leukemia sucks. It has been 4 weeks since I have been allowed to kiss my wife. (Definitely been taking that for granted!) 4 weeks! Now don’t get jealous but truth be told, one kiss from my wife can erase a month’s worth of fret, anger or sorrow. I know, you’re jealous anyways, you just couldn’t help yourself huh? Its ok, but she is mine, so get your own!

That is how I am doing. That is what’s spinning around in my brain on a minute by minute basis.

The good news is how Jacy is doing? Jacy is slowly getting better!! Her white cell count is stabilizing, the constant fevers of 101-104 are now holding steady 99-101 (yes that’s a good thing)! She is still very uncomfortable from added fluids in her cells. This comes from bag after bag of fluids added to help with a bleeding bladder! So there is roughly 20-30 pounds of extra water weight on her at any given time. This added fluid is extremely uncomfortable and at times painful. Jacy is still having problems with severe nerve pain to the point a physical therapy team has begun working with her on a daily basis. Being the stubborn Cuban woman she is, nothing is keeping her from trying to walk the entire circumference of the quad. Chairs strategically placed around its outer perimeter have assisted her with this feat! She called me yesterday to announce she made her first full lap! It hurt like hell, she struggled a bit, but she made it and felt like she finished a marathon! Her lips and throat have been saturated with sores and as of yesterday most of her bottom lips inner skin had sloughed away, leaving raw exposed nerves. This is all part of recovery as the white cells are learning what is foreign, foe or friend within its new host.

Word on the street is if she loses the temperature spikes, the bladder stops bleeding and she is able to walk a little more consistently without so much pain, they will turn her loose to outpatient care. Outpatient care requires living within 30 minutes of Stanford in case of a recovery reversal such as high fever, difficulty breathing, an infection of any kind or onset of GVHD (Graft Versus Host Disease). This of course means she moves into her dad’s apartment close to Stanford where her family will assist with her recovery. It also means once school is in session our family will make the journey every weekend to spend much needed time with her.

When I spoke with her today her spirits were high! She feels as though she is finally turning the corner and is looking forward to making it out of the hospital signifying the next step in recovery.

Thank you all for the continued prayers, support and love. The Franceschi clan is very grateful for each and every one of you!

May God bless you all, as together we watch my awesome wife Kick Cancers Ass one more time!

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