Goodbye Stanford

2015 has come and gone.

Quite frankly it can kiss my ass.

If the first day of 2016 is any indication of things to come, then we are headed down the right path for change.

At approximately 4:21 in the afternoon of December 31st 2015, my wife Jacy Franceschi walking under her own power stepped out of Stanford Hospitals E1 BMT wing a mere 30 hours after 2015 gave its final shot to our family with the loss of my father.

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Take that 2015! That’s right suck on that! You can go to hell you rotten shitty damn year! You tried your best to take everything away from me, you tried your best to destroy our family! 2013 and 14 really had me weak and on the ropes but neither of you got us and you 2015, well you failed to finish the job! Oh you did your best to bring us down, but I’m not that easy and in the end it wasn’t even me that gave you the last middle finger for you see 2015, my wife was much tougher than us both!

Watching her smile as Heather our nurse disconnected the final IV line from her arm, seeing the light in her eyes grow brighter as each second grew closer to discharge. Packing all her belongings up, which after 6 months was an entire car load and then some. It was an amazing experience.

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At 4:15 she put on her HEPA filtered mask, walked to the door of her room, looked around it one last time, took a deep breath and opened her door to freedom. Walking down the hallway she was greeted by the entire working staff. Applauding and cheering with homemade signs congratulating her it was more than she could take. Tears streamed down everyone’s eyes, hugs were had and the pure love from every person who ever made contact with my wife was more than evident.

To say we felt like family while housed in this unit is an understatement. Each person there is special. To be a nurse, nurse’s aide or doctor in that unit is to be a remarkable human being. Every day I walked through those doors to see my wife I felt at ease. Never in the entire 6 months, even when things were rocky did I feel as though I really had to worry. When Jacy was transferred to Intensive care these people fought to get her back where she belonged. There was never a moment where her needs were not met and as is my wife’s personality she made sure every single person within E1 who crossed her path knew just how much she appreciated them.

As we made our way out the door, Jacy cried. I am sure she was crying to finally be free, but I also know she was crying because she was leaving so many special people behind. It is what everyone wanted for her but there is an intimacy that comes from creating bonds with your caregivers and every now and again those bonds become stronger than just the patient caregiver relationship. If you are lucky that happens with one or two, but if you are really lucky it becomes the whole damn staff!

I cannot express adequately just how thankful I am to the entire staff at E1. I tried my best to hug each and every one who was there before we left. To everyone I hugged and to everyone I missed, I love you, you helped save my girl, you always treated myself and my children as though we were your family and for that I am forever grateful.

I never want to see you again!

Just kidding we are coming by to visit!

Jacy got into the car took a deep breath and as we drove away, she sat quietly. Parker asked her if it was weird sitting in a moving car after being in a hospital for so long and she said yes. The 30 minute ride to her dads was silent. I could tell she was taking it all in, and trying her best to not be nauseous.

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We arrived at her dads and were met with hugs and happiness. Moving her belongings into the apartment it became official. We were finally on to stage two.

Her dad had completely repainted and redone the apartment just for Jacy. It is vibrant, comfortable and Jacy loves it! We spent the better part of the afternoon putting away her things and sorting her 23 medications that need to be taken three times a day. Uggh! Makes my stomach hurt just thinking about it! Within a few hours, people dwindled away, Jacy and I were alone for the first time in forever. We talked about the future, upcoming appointments and what it will take to care for her. She finally got a shower with no nurse, no lines, no hospital towels, and a nice soft warm bed to climb into afterwards. She was exhausted and ecstatic all at the same time.

Jacy Franceschi, my wife, my hero, the woman I love and adore, welcomed the New Year in by drifting off to sleep…..

Just the way it should have been….

2016 will bring some major new challenges to our family, but as it arrives and we travel through its first month I want each and every person who follows my blog, has helped my family or has been there for me to actually cry upon to know.

I do love you all and I don’t use that word lightly.

Whether it has been a kind word, uplifting passage, or deed done, I thank you. You are all part of my family. We couldn’t have done this without all of your support. We still have a long road ahead but it feels a little less bumpy and the directions a little easier to follow.

Here is to a happy and blessed 2016.

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Life? Leukemia? You just dont have it all figured out…

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Life has a funny way of throwing things into your face. You may think you know what’s going on when in reality you are just as clueless as the moment you awoke this morning, groggy eyed, wondering if everything flailing inside your brain was a dream or a continued reality you just cannot grasp.

Last week I dreaded going camping, it felt as though I was trespassing on the sacred vows of marriage. The thought of leaving my wife behind at Stanford where she has been for three weeks to camp with friends, drink beer, fish and play a variety of water sports with our children; well It just didn’t seem right.

Unbeknownst to me early on the morning of our departure my wife after having a particularly hard night filled with rigors, 104 temp, vomiting, and excessive fluid buildup leading to a case of difficulty breathing had in fact only one thing on her mind. It had nothing to do with what was happening to her, on the contrary it had everything to do with me. That morning as we loaded up to leave, lump in my throat, with nervousness screaming aloud in an already crowded room known as my subconscious, my wife asked her doctor if she was going to die.

Jacy didn’t want to know if she was going to die for her own welfare, although she was terrified with so much pain and discomfort. No my wife asked by simply stating; I just told my husband to go camping with our children, to go meet friends and have a good time. He doesn’t want to, he feels the need to be here, with me. Doc am I going to die? Should he go? Her answer; I cannot tell you whether or not you are going to die, but what I can tell you is even though this is hard right now, you have all the positive signs of making it through; we can manage your symptoms you just need to stay focused. If I were to tell you anything it would be to let your husband know it’s ok to take your children camping. We are here and you are receiving the very best care. And with that my wife never said a word.

The weekend was perfect, every child did exactly what they wanted to do, be it tubing, wake boarding, or just plain old fishing with dad it was a sunny break after a long bleak storm. Every moment, around every corner of the campground I looked for my wife, I knew she wasn’t there, but it’s what occupied my mind. I answered all the curious questions and felt at home as we were surrounded by some of the most caring wonderful families. It was definitely a delight.

Saturday night I was feeling my emotions associated with this weekend were all figured out. You know as in; this was Jacys way of allowing me the ability to tell myself it was ok to have fun without her, to not worry or feel stressed if even for a short period of time. That my mind and body needed to quit worrying for a minute and just regroup so upon returning my abilities to remain strong for her and the kids would be renewed!

Then I met a Gary (name changed for privacy)

Standing by the band (yes this camping trip had a band, and they were good, really good), beer in hand, feeling pretty confident with my all-knowing sense of entitlement, Gary walked up and introduced himself.

You see Gary has a wife, Gary’s wife is a two time Leukemia survivor which included two Bone Marrow Transplants. Now I had a few, so I am not positive, but my recollection was the first round was actual bone marrow and her second round stem cells exactly like my wife. In great detail Gary discussed each and every day, the highs and the lower than lows. Side effects, sicknesses, water weight, seizures, the BMT wing at Stanford, we talked about it all like warriors likened to each other through battle. He talked with sincerity about a wife who was ten years free and clear when she didn’t feel right and she knew. About whether or not to go through with another BMT. About making the right decisions and struggling together through it all. Gary was a kind gentle man who spoke from the heart.

After we finished talking my head was swimming, how they mirrored many of the same issues my wife currently faced, how he struggled the way I am struggling now and reassured me with patience it would be ok. I left a little early, went and laid down, overwhelmed by it all.

The next day we hung around camp, fished off the dock and hung out with our friends. The boys/girls went tubing while Parker and I fished. In the middle of the day Gary was standing near me when a nice lady walked up to which Gary stated with a smile; there he is, you wanted to meet him? She looked confused for a second, then putting it all together stuck her hand out to shake mine and introduced herself as Sara (Name also changed for privacy), Gary’s wife.

Sara and I had a very nice talk about Bone Marrow Transplants and it was during this moment that a realization struck me right over the head. We weren’t only supposed to be here for the relaxation it afforded our children, the ability to unwind some of our stresses or allow my wife to feel as though she wasn’t impeding our children from enjoying their summer.

No, once again life had shown me how arrogant it was for me to think for a second that I had it all figured out.

You see God always has other plans.

We were there so I could meet this couple, hear their story and understand that it would be alright. It was going to be hard, there was no doubt to that fact. But in the end, it was going to be alright. We would survive this, she will survive this disease, this transplant. There would be plenty of dark days on the road to success, but to fully understand success comes at a price and through hard work, a life able to be lived was just over the horizon. This man’s wife was here, she survived twice to be with her husband and their children and now she was here helping me to survive as well.

When we left on Sunday, we all hugged and said our goodbyes, I didn’t get the chance to say goodbye to Gary and Sara, but they have been constantly in my thoughts ever since.

Don’t ever think you have life figured out for you would be wrong, God knows, and if you listen closely you just might hear what he has to say.

UPDATE: I wrote this Sunday night and something told me to wait. So I listened to that inner voice.

Monday was a hard day for me as I watched my wife suffering through almost thirty pounds of water gain, her face and lips swollen, her inability to speak because of lesions in her throat, almost in tears due to excruciating pain in her legs and knees with an inability to stand for more than a second without collapsing. There is or was nothing I could do, but hold her hand. She slept on and off, would hallucinate in the middle of a conversation with me, and constantly thrashed around uncomfortably with what looked to be an Alaskan pipeline of IV tubes going into her or drains coming out of her. But through it all she would smile, tell me she was happy I was there, and we would hold hands before she fell asleep again.

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Tuesday-Today; another long hard night with a myriad of problems, at one point she sounded destitute, unable to handle her state of being. A few hours later she called and said she was feeling better, we talked for a while about my meeting this couple and she agreed it was all in God’s hands. A few hours later she called again and could speak fairly clearly. She said; the day was just looking a little better and we talked about the kids. Then this evening she called one more time. Her blood results came back and white cells are forming! She is engrafting! It is the first major step towards recovery! The nurses were also referring to her having the ability to become outpatient within a week or two!!! It was all too much for me to comprehend when she told me and I am afraid I may not have come across as excited enough, but all I can say is thank you God, thank you everyone, keep the prayers coming she will need them to get through this next week and we will all pray her new immune system likes its new home and continues work hard for our girl.

All things happen for a reason, I am fairly certain my attitude would have continued in despair if not for a chance meeting during a camping trip that I was certain I wasn’t supposed to be on.

charlie brown

Promises

I don’t care who you are or how strong your resilience, when closing a door behind you to a hospital room within a Cancer/Leukemia ward holding the most precious of beings in your life! You cannot help but feel as though things are now permanently out of your control.

And you would be correct, for they are…

Three days ago Jacy and I got into our car. We had a relatively uneventful trip into the bay area, over two bridges, through San Francisco into beautiful Woodside ending on the famous Stanford campus. 19 months, 6 of those in treatment then remission and relapse all leading up to this moment. I cannot describe adequately to what end my brain continues to function. This moment, this very moment, where all I cherish is left in the skilled hands of others. Like knowing your final day on this planet, or being 18 and not quite comprehending that yes you too will one day be 50 then blinking only to recognize that day is tomorrow. It is more than I can handle.

13 years ago I promised to always take care of her, in sickness and in health, for better or for worse; to never leave her side no matter what. I am many things in this life, a jokester, a story-teller, a father, a coach, a teacher, sometimes even an asshole, but when I make a promise I do my very best to keep it! The ability to do so comes from having made hundreds of mistakes, letting numerous people down, lessons learned and realizing who and what you have become after living through personal tragedy and the suffering of others.

I promised her and I have always done my best. When we were trying to have children and nothing was working, I stood strong and promised her it would be alright, we laughed, we cried but I knew God would always provide for those with faith. We now have Parker and Jessica

I promised her that even though we would have no money for a long time we would make it after purchasing our ranch, because we knew it was where we wanted our children to grow up. We moved in with $250.00 dollars in the bank, we understood the payoff would never be monetary but would come from rewards reaped over time by our children. We are making it, it is a struggle at times but our children are amazing human beings, growing and thriving thanks to this place we etched out of the land; and they will forever know where home and family are to be found.

I promised her when we went to Haiti together I would let nothing happen to her or our group as we traversed a country still struggling with political power, corruption and strife. I did my best while on the island serving these beautiful people as local politics toyed with our mission. My promise was put to the test when our sail boat home tipped over in heavy wind and wave. Trying my hardest to hold as many as I could while remaining calm so others would be calm as well all while praying quietly, gripping those I love tightly and doing the best I could not to show my own personal fear I kept that promise.

I have promised her time and again. I have done my very best, but as I write this I am scared. Not something that is easy to admit. For I have promised her this will all work out, she is strong and it will be ok. But I am scared as hell. I am not sure how strong I can be this time. I am afraid of my own promises, that maybe they will be unattainable. My prayers feel unanswered, no calm has overcome my soul as in times past. I am tired of being tested by life, love and loss. I am growing weary and yet this is just the beginning. I feel as though my inner Betty needs a 5 month energy drink as opposed to 5 hour.

Closing this door to her room and walking away, leaving the one I love to modern science and medicine in hopes it will save her life is more than I feel I can handle. I pray she doesn’t suffer as others are currently suffering in the very wing she is assigned. I pray that God sees this woman for all she has accomplished in her life, knowing she has more to do here with people who need her smile, warmth and charm. I pray she heals with little side effects, becoming stronger day by day until she is the woman she chooses to become post-transplant.

I am praying all the time….

Jacy is currently on her 9th dose of chemotherapy in three days. She only has 11 more doses to go. Her spirits are up even though she hasn’t slept. As she puts it, I run to the bathroom, nap then an hour later run to the bathroom again. Her spirit is high, she is still feeling very positive, and I have no doubt she will show me the way as she has always done in the past through her amazing spirit. She is my wife, she is my best friend, and she is my life.

I promise……….

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