The fight..

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

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Two steps forward, one step back!

As soon as we begin feeling positive; BAM!!!! Slapped in the face again! It’s a funny little dance the human body does when bombarded with multiple medicines, platelets, fluids and of course a great helping of brand new white cells that want nothing to do with all of those things combined! This of course also makes it difficult for these cells to thrive within their new host! I imagine this dance within her body looks something like the jitterbug only with a twist of slam dancing punk rock style! Yep, yesterday I thought we had crested this mountain and were on a cool ride downhill towards the finish line! I was wrong….

So what is up you ask?

It appears our girl has developed an infection in her spinal fluid. Yesterday she wasn’t feeling well, began acting confused and wasn’t answering questions appropriately. Doctors put her on a blanket antibiotic as a precaution while they investigated. Today she spiked a fever (102) and complained of head and neck pain with her pain being a ten out of ten! Needless to say Jacy feels as though this is a gigantic set back. 

After meeting with the Doctor a few minutes ago, we won’t know for sure what she has contracted until cultures come back in 48 to 96 hours, but the educated guess leans towards  possible spinal Meningitis. 

As we speak Jacy is passed out from Benedryl and hooked up to 7 bags of fluids. She is receiving platelets, antibiotics, fluids, potassium, a cocktail of vitamins, and pain medications. Hmm makes you wonder if there is actually any blood left huh?

According to her doctor this is merely a bump in the road, another small set back on a journey with seemingly endless break downs and flat tires! But try telling our girl that! It has been a long grueling 93 days here at Stanford! Thank goodness for such excellent care! 

We will eventually arrive at our destination, (home) and as we start back up this hill again we will continue carrying everyone’s prayers with us. They do lift us up and keep us strong! 

I suppose sometimes when you think you’ve reached the top it is only a plateau, a respit for a continuing journey. A good reminder that sometimes we are not in control of our outcome or destination but to have faith it will all work out in the end. 

  

Have we turned a corner?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I choose rejoice….

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Up the Hill, Down the Hill…….

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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

When a shower isnt a shower….

My chores are finished, children, horses, goats, chickens, ducks and dogs have all been fed. Walking onto the rear porch I look back as our ranch lays peacefully under a dusky sky, the sun bidding a final fair well. It is perfect.

Everyone has their own end to the day, a moment when the world stops and we are able to take a deep breath. Walking into the house the kids are chatting it up after dove hunting, and a hum of laundry shaking our houses foundation rattles off from the basement. Taking a moment to converse with each child, I relish in understanding the what, where’s and how’s of each of their days. My oldest has done another fine job of making sure homework is finished for me to check, their stomachs are full from the wonderful meals arriving and they have showered, washing away the days grime.

Ahhh the shower. Hot water rushing down my body, soap, a shave, it is all I look forward to each and every night. Its cleansing properties revitalizing me, relaxing my stressed out brain and allowing me the comfort of shorts and a t-shirt. My idea of pajamas.

I never realized just how much we take for granted the prospect of having a shower. While in Haiti showers were a luxury, yet our group was allowed a cold bucket shower each and every night during our first trip. The second trip to Haiti a year later left us an even greater asset, actual bathrooms with tiled showers! So we never really lost that sense of what it is like to not shower, to be clean.

Now there is always camping but I say; Camping doesn’t count! Most camping trips it is a rite of passage to see how many days one can go without showering! Of course being the manly men we portray ourselves to be, it never matters what our mouths and egos have arranged for a final shower date! In the end our wives, girlfriends or significant others ultimately pull the “you stink” card demanding a shower now or sleep alone, outside with mosquitos the size of VW Bugs. Yes dear!!!

Yesterday morning my wife called me. Now first off I was super excited that she could see the phone well enough to locate my caller ID! But then she tossed out this very exuberant statement: I took a shower on my own today and it was heaven!

You see Jacy hasn’t been able to see or get out of bed due to lack of muscle strength and motor skills, so to hear her say that she had in fact taken a shower on her own was, well, heart stopping! After congratulating her my first question was did you need any assistance? She said no because she was bad ass that way! We laughed and while she recounted every water drop and how wonderful it made her feel as she sat there basking in its warmth I thought to myself. How long has it been?

Before I could ask, she blurted out how much she missed being able to shower for herself, to wash herself, to feel independent enough to care for herself! It had been roughly 17 days of sponge baths, bath wipes and lots of cream or powder. 17 days of having multiple people handle you, wash you, and manipulate your body for efficiency while undertaking this task. Yes the nurses there are phenomenal, yes they care for each and every person like they were family. But when you barley have enough energy to eat let alone wash yourself how quickly would having multiple people handling your hygiene get old? Not to mention leaving you feeling just a tad bit defeated?

She went on and on, it was awesome to hear her happy, her voice still cracking, sounding horse and dry, but happy. Who knew the simple act of a shower (something we take for granted) would become an extraordinary event, allowing her to regain control of her life if even for just a few moments.

Which leads me to an update: Jacy is getting stronger, her doctor told me the day before yesterday they will continue weaning her off of steroids. The experimental drug Jakafi is still holding its own which is a good sign for now. There is still a plan B drug in place should there become an issue with continued use of Jakafi. Her eyesight remains blurry with bouts of clarity. Even though she won’t recognize it out of sheer frustration, it appears to me as though she is having more moments of almost being able to see than not, another good sign! Random misspelled texts lend proof to my theory! Her sense of humor is improving with each little victory and as of this very moment she is on a phone call with a BMT, GVHD survivor who like her had stage 4 GVHD, was in the hospital for a very lengthy stay and in the end he survived. He is a teacher who is currently back at work and living his life to the fullest. More to come on what transpired during that conversation. She is a fighter, and doing so the only way she knows how, with grit. Thank you all once again for the continued support and prayer.