Tuesday, December 30, 2014

Goodbye 2014... Hello 2015

Happy New Year 2015 everyone! I know I have done a terrible job at keeping this blog updated this year... There's no excuse really. Honestly, at the beginning of the year the lack of updates was simply due to life being so "normal" there wasn't much to write about (thank God for normalcy!)... Toward the end of the year, however, the lack of updates was due to not really knowing what to say, or how to say it... I'll explain. Here is my year in a short-ish recap :) 

2014 started out with me turning 26, having a fun tea party with my girlfriends to celebrate and beginning my second year of college, holding a 4.0 GPA! (I don't mention that to boast, I mention it because I have been in 3 coma's and undergone experimental treatments that nobody knows the long term effects of- and my brain is still working, thank God! ;)

Studying hard in Medical Law & Ethics class :) 
My sister Katherine is also back in school studying to become a medical assistant! Michelle just finished her very first semester away at college and she loves it! She is thinking of majoring in psychology, which means all 3 Stevens sisters may end up in the medical field! They are both doing so great and I couldn't be more proud to be their big sister.

In June we moved and I really love our new house. It is all on one-floor and for me and my wheelchair, it is really perfect.  We are still living in Naples, about 5 minutes away from where we used to. There's really nowhere else I would want to live. It's so beautiful here!

Every sunset is prettier than the last and the next....

Around that crazy time we found out I would need to have surgery, and for many reasons  (I was mid-semester at school, we were in the middle of packing up our house to move and I was feeling really well) we decided to hold off a month or two.

In between my summer and fall semesters I knew I would have three weeks off in August, so I planned to have my surgery during that time, figuring I would go down to Mexico, have surgery, spend a week or two recovering there and then head back home where I would have another week or so to regain my strength before classes began. Perfect plan, right? ...Yeah, I thought so too!

But as often is the case in life... Things don't always go the way we planned.

This pretty much sums up life.

Two days before leaving for Mexico, my mom surprised me with something I'd been wanting to do for a very long time... Go water tubing! Living here in Florida it is rare to go to the beach and not see someone tubing behind a boat. They always look like they are having so much fun and I always would tell my mom, "One day, I want to do that!"

Michelle & I ready to go!

Well, my 'one day' came in July... And I loved it!!! My mom explained my situation to the captain of the boat and he was super careful and didn't go very fast, but still, it was an amazing feeling to be gliding above the water, so free and without limitations!

At the time, I never could have anticipated what the coming months would bring or how often I would think back to this perfect day on the beach with my mom and sisters, praying for days like this to become a reality once again. 

During the first week in August mom and I headed down to Monterrey. You know you're a frequent flyer when the airport staff all call you by name :)

My airport friends :)

I was admitted to the hospital for all of the typical 'before we cut you open' testing and all was a 'go' for surgery the next morning. I believe we all have guardian angels.. and I feel certain that I have been blessed to meet a few of mine here on earth- my amazing doctors. Words can't ever express the love and gratitude I have for these guys for all they have done and continue to do for me!  Here's a pre-surgery "selfie" with Dr. Cantu!

My hero, the super incredible Dr. Cantu and I pre-surgery

My skilled and talented surgeon Dr. Balli
I love all things medical, and enjoy having pictures taken during each of my procedures. To me, it's fascinating to see the inside of my own body, however, since most people don't share in that enthusiasm, I won't post any of the graphic ones.. but here's a selfie of Dr. Luigi during surgery!

The amazing Dr. Luigi during surgery
Thankfully, aside from taking longer than expected due to scar tissue and adhesions from previous procedures, the surgery itself went great! Flawless actually. I was back up in my room by late afternoon. The amazing team of Drs. Cantu, Barrientos and Balli had pulled me through once again. 

"Praise God, this was rather easy" I thought. Yay!

It wasn't until a few days post surgery that I began to have symptoms that indicated something wasn't right. It started when I tried to get up for the first time and felt the room flip from under me. I couldn't control my blood pressure and heart rate. Laying down my heart raced at 130 beats per minute. Sitting up, it dropped dramatically, causing dizziness, vertigo and fainting. I had intense pain-  in my abdomen, which is expected after you're cut open, but my worst pain wasn't the incision. It was the searing pain in my right leg, which has always been the worst affected by RSD for me.

I began losing a lot of strength, weight and fluids. I developed a case of intractable hiccups that lasted 3 weeks, making it impossible to eat or sleep and causing severe pain. Soon I started having difficulty keeping down any food. And the pain continued to spread and worsen.

I wish I could say these were all brand new symptoms that I had never experienced before, but unfortunately, these were all too familiar

RSD is a malfunction of the central, peripheral and autonomic nervous systems. Even for someone who has been in prolonged remission (nearly 3 years! :), anything that causes dysregulation or short-circuits any of these systems (like a surgery, infection, broken bone or other physical trauma) carries with it the chance of a relapse.

And unfortunately, that's what happened. These symptoms have less to do with the surgery itself...and everything to do with my body's response to it- which is, to attack itself. The surgery was just the 'trigger'.

Thankfully, I was in the best place possible. With access to Dr. Cantu and his team, the most brilliant minds in the world on treating this disorder. God and Dr. Cantu have a 100% track record when it comes to restoring my health. And those are pretty good odds

To make a veryyyyy long story short(ish), my anticipated two weeks down in Mexico ended up becoming over 4 months of numerous hospital stays and 3 surgeries. Every time I was doing well enough to be discharged, I ended up going back a few days later for stabilization of symptoms.

The mountains in Monterrey, always reminding me to "look up"
Whenever I go into the hospital, we print out bible verses and hang them on the walls around my room. Usually 2 or 3, sometimes more. But this time, only one verse kept coming to my mind. Psalm 46:10. "Be still and know that I am God." I printed it out and put it in my suitcase. I hung it in my hospital room and soon would realize the irony of choosing this verse, out of the thousands I could have chosen.

For months, 'being still' was the only position my body could tolerate. Even moving my head too quickly triggered my heart rhythm to go crazy and made the room spin. Obviously, God knew all of this ahead of time... I think he was trying to send me a hint.

Finally, by mid-October I was starting to get better. I could sit up for 1 hour, then 2, then 3. I began eating soft foods and feeling stronger. The pain was present, but manageable. The treatments seemed to have stopped my body from attacking itself, and now I needed time to rebuild and recover.

Encouraged, we planned to fly home during the first week in November.

No sooner did we make those plans, I ended up back in the hospital. I woke up with a fever and assumed I ate something bad or had been exposed to the flu. But my mom convinced me it was a good idea to go back to the hospital just to check things out.

Why are mom's always right? (I mean, I know my mom is exceptional, but really- How much must I owe her for continually saving my life and taking care of me?)

The best mom in the entire world and I before surgery #1

It turns out I was in the early stages of sepsis. Somehow the medi port in my chest got infected and needed to come out ASAP. This would mean 2 more surgeries- one to take out the infected port and place a central line, at least 7-10 days of IV antibiotics and than, once the infection cleared, another surgery to place a new port.

Never a dull moment. To say I was frustrated would be an understatement... But at the same time, I was grateful it happened while I was still in Monterrey and not sitting on a plane back home. I probably would have thought I contracted Ebola on the flight!

Unfortunately, infections also wreak havoc with RSD. Sometime during the days of running fevers and shaking with chills, I began developing painful RSD lesions and blisters on my right foot, and it soon mirrored onto the left. The characteristic and strangest thing about this type of pain is the burning quality. If I were not able to see, I would swear my foot was actually being lit on fire. Yet, because I can see, I know there are no flames, no smoke, just these sores that are burning from the inside out.

Looks like: 

Feels like: 

Again, the blessing is I was in the only place in the world where I can get high dose ketamine treatments not allowed in the U.S. Early treatment offers the best outcome and so Dr. Cantu began giving me high dose ketamine boosters right away. Within a week, the sores were healing. Praise God! 

"Be still and know that I am God."

Finally, my fevers broke and it was safe to implant a new port in my chest. Because I've had so many central lines, ports and other procedures, my veins are incredibly difficult to access and locate. Dr. Cantu felt to safely do this surgery, a vascular specialist should be in the room, using special equipment to examine the veins near my heart.

What they ended up finding shocked them. Most of the large, major veins leading to and from my heart had blood clots in them. Several veins were completely blocked. Others had very minimal flow. Obviously, that's not good. Your heart needs blood flow!

When I woke up and found out, I had a lot of questions... Mainly- how am I even alive with these?!?

Basically, when a blood clot forms in an arm or leg, the limb becomes swollen, red, warm and pretty painful. These symptoms cause you to seek medical attention ASAP.

 However, when clots develop in the veins in your chest, they are symptom-less... Well, until they're not. Stroke, aneurysm and heart attack are usually how these clots make themselves known. And often, by the time these clots are discovered, it is too late to do anything about them.

The timing of this port infection likely saved my life. Because we caught the clots now, I was able to begin treatment right away. As long as I stay on the medication, take it easy and follow doctor's orders, my prognosis looks very good!

"Be still and know that I am God."

That God can use an infected port to lead the doctors to discover a hidden problem that could've been fatal... Is amazing. God's provision and protection are incredible!

I will say, spending months back in bed, not feeling so great, really gives one a looooot of time to think.

Not that I don't think about the past everyday, I do. It's just that over time, I have thought about it less and less. I have had to. To move on, cope and live my new life to the fullest.

Looking back, I am just in awe all over again at how miraculously and perfectly God continues to lay out every step of this crazy journey.  Not that I would ever in a million years choose this for my life, I definitely wouldn't. But being able to see bits and pieces of how God is working all things for my good and complete healing, gives me peace and the strength to keep going forward. He's got this.

So. Yeah, 2014 wasn't what I had planned... But that's okay. It had a happy ending- Mom and I finally made it back home 2 weeks ago, just in time to celebrate Christmas with the family!

I missed them so much! Especially Molly! (Just kidding, Katherine, Michelle and Dad.... Kind of :)

The first thing I wanted when I got home was Molly back in my arms..
Thank you Dad for bringing her back to me!!.

I am still pretty weak and recovering from the events of the past 5 months, and some days are easier than others. For now, I am 'being still' and focusing on how far I have come, rather than on how far I still have to go.

I am very excited for a New Year. With Jesus, the best is always yet to come and I fully believe 2015 is going to be great! I hope that by this summer I will be strong, and water tubing again (or maybe even swimming with the Dolphins... Hint hint Mom! :)

Thank you for checking in and especially for the continued support, love and prayers! You have all carried me through this journey and I am forever and eternally grateful!

I hope that you all have a wonderful New Year full of health and happiness... but if not those things, I hope you can find joy and peace in being still and knowing that He is God. 

God bless!

Love, Jessica

Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail; They are new every morning; great is His faithfulness! Lamentations 3:21-23


Anonymous said...

My dear Jessica... thank you for this amazing update and for making me once again realize how fragile our lives are and how little control we humans have over things. I love your faith and your spirit and how you always make me grateful for my life's blessings even when I may be feeling down and blue. What a journey you have been and continue to travel. Your mom is truly a super woman in more ways than one. I love your team of doctors and their commitment to your health. I pray the coming year 2015 brings you the total remission you so deserve. Love you Jessica. Xoxo Rosemary

Alan said...

Thank you for the update J. I had been wondering and praying after not hearing for quite some time. Do you have a Facebook page?? Keep on being God's hands and feet! Alan

Anonymous said...

Dearest Jessica, You continually amaze me- with your sheer and incredible endurance, your deeply rooted faith, and your complete trust in God. These are the things we are all called to, but you have been a profound example of "walking the walk." Your open heart and beautiful words make the day stop and the mind open to the ways that God is always communicating with us, hoping that we recognize it's Him. You are a special woman, Jessica. My thoughts and prayers go to you for strength and healing. Love you! Angel xoxo p.s. Please say hi to your amazing mom for me!!

Fern said...

I have been behind but just read your update now. Your journey is a roller coaster ride to be sure! I feel like I am on myself but am always encouraged by the way God sees to my needs, just as you see. I know that there are hard days but you are a warrior for Christ and an angel on earth yourself as you continually share your struggles and your life with all of us. I have kept you in my prayers as I have seen on FB that you are struggling again. May God heal your body most completely! again!!

Leah Graham said...

I think that Ketamine is used for general anesthesia in decades.

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Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)

As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!

Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.

Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.

Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!