Jessica's Journey: December 2011

Sunday, December 25, 2011

MERRY CHRISTMAS!!

I am home, celebrating Christmas with my entire family today for the first time in 5 years!! We are eating, laughing, hugging and kissing... It's incredible!

I feel like this must be a dream.... and if it is, I hope I never wake up!

I don't have the words to express my gratitude and happiness today! But, as I often say, a picture is worth 1,000 words....

So with these pictures we wish everyone a very Merry Christmas, filled with love, family, happiness and health.

Happy Birthday to Jesus and Merry Christmas to all!

In His great power and love,

Jessica
.....& ALL of the Stevens family!

Together again, 2011!! AMEN! :)

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Monday, December 19, 2011

I AM HOME!!!!!!!!!!!!

Good morning everyone!! This is my first blog from HOME!!!! I am super tired, but SO happy!!

I thought I would share with everyone the update that I sent to Dr. Cantu last night... it tells the whole story :)

Hola Dr. Green Shirt!!!

I am writing to you right now from HOME!!!! We just got home from the airport and right now I am laying in my own bed, in my own house, in my beautiful new bedroom, surrounded by family... It’s unreal.

They are all just staring at me, smiling and crying... looking at me as if I am this brand new masterpiece that was just put on display in a museum. Nobody is sure if they should touch it, or what to even say about it... they are just completely amazed at the "new Jessica" that has been returned home to them!! ...A Jessica who can now move around, sit up, talk, laugh, be hugged, held, touched, kissed (maybe too much!!) loved and EAT with them!! It's beyond belief. I think you would be very jealous of the amazing feast my Italian grandmother cooked for us today! :)

We started our day at 3 AM yesterday leaving our apartment in Mexico and heading to the airport for our 6 AM flight. Cindel slept over with her mom Claudia so they could drive us.

On the flight from Monterrey to Atlanta I was able to watch the sunrise! It was incredible!!

The flights themselves went pretty well and I held up better than I expected! The staff and everyone at Delta went out of their way to make me feel comfortable and more at ease.

Every time the flight got bumpy, or I was feeling anxious, or nauseous, I just looked at my favorite picture—the one of you and Patch Adams and it immediately made me smile and feel better.

The Mexican security check went fine-- they read your doctors letter and didn't touch me at all. On the USA side though, they took me into a private room and wanted to "gently" touch me everywhere and swab both me and my wheelchair for "further" inspection.

It was time consuming, but everyone was really nice and so excited and happy for me when I told them my story and how I was traveling home for the first time!

Me with Nikki

I think the part of the trip that caused the most discomfort was having to be transferred into this small “aisle” wheelchair to get in and out of the plane. Definitely not comfortable at all.... and I am pretty small, I can't imagine how anyone larger than me could even get on one of these things!!

On the plane rides my mom (obviously) told EVERYBODY (cleaning crew, flight attendants, pilots, whoever!) the whole story about my miracle in Mexico.

Mom and I

We also introduced everyone to "Nino Luigi "Patch" Cantu"-- my bear, who has never left my side for the past 2.5 years! :)

All of the pilots came over and sat down with me, congratulated me, wished me well and took pictures with me too!

This is me with the two pilots from flight 4988, David and Jon

Me with Rob, Otis, Dena and Tony on flight 1430

My mom somehow even managed to get herself invited up into the cockpit, with the pilots, to fly the plane! (Now, THAT is a scary thought!)

Captain Sarita

As I was wheeled out of the terminal I could already see the signs and hear people screaming my name!!

I felt like my heart was going to beat out of my chest! Finally, seeing my family again and their excitement over seeing me -healed-was just the greatest Christmas gift I have ever had in my life.

The three Stevens girls-- back together again!!!

My daughter (dog) Molly was at the airport waiting for me dressed in cute pink ballerina dress. I was so worried that she wouldn’t remember me, but she did! She ran over to me, jumped on top of me, kissed me and fell asleep in my arms!

There are really no words to describe today, except perfect.

Your ears must have been ringing because as we sat around re-uniting, all we could talk about was you! My uncles wore green shirts (my godfather even wore green pants!) in honor of you!

We had a professional videographer at the airport to capture this moment for our family and at the end of the tape he went around and had everyone say a special message and wave “hola” to you in Mexico!

I am extremely exhausted and I know I am running on pure adrenaline right now. I will probably crash for the next few days, but I wanted you to have these photos tonight, so that you can feel like you were here with me, because to me, you were. The reality is, for the rest of my life, every new or happy moment that I am ever blessed to get to experience, you always will be a big part of it because you gave me this chance to have a new life!

Seeing my Florida home for the first time in 5.5 years!!!

So, just know that tonight, because of you, the Stevens' family is sleeping under the same roof for the first time in 2.5 years!!!

Goodnight, Dr. Green Shirt, Thank you for saving my life. I love you…

.....Actually, WE ALL love you!

Te extraño mucho!

Love,

Jessica

Your #1 Patient

"Love bears all things, believes all things, hopes all things, endures all things."- 1 Corinthians 13:7

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Tuesday, December 6, 2011

Counting down the days!

Hi everyone!

We have officially begun the final countdown until my homecoming! My sister Michelle has calculated the exact days, hours, minutes and even seconds until I will be home with her. I am smiling now just thinking about my family, finally all together again. I can’t wait!

I can honestly say though, that only a few times in my life have I ever felt so overwhelmed with emotions that I feel almost speechless, (ask anyone- when I am well, I rarely shut up!)

Right now I feel like I am a baby bird who is about to leave the “nest” for the first time in her life. Excited, yet scared, happy, yet nervous, optimistic, yet cautiously…

I guess the good news is that more than 90 percent of the time, the baby bird DOES eventually fly. :)

When I came to Monterrey, I never saw the day I would fly out of the nest ever coming. My parents were told that at the rate I was deteriorating, I could maybe live just a few more months in that condition. I was just hoping to live.

We certainly never intended on having to stay in the hospital for 14 months, or in Mexico for 2.5 years! I never could have anticipated the complications, or how slow and difficult my recovery would be.

But I also never imagined that I would come to know, adore and truly love my doctors and so many people here.

They have been the ones physically with me these past 2 years, through hell and back, and I know my mom and I never would have made it through without them.

I may have come to Mexico just hoping to re-gain my life and health, but in the process I have been so blessed to have also gained a second “mexican” family!

I don't think I fully realized, until now, just how emotionally difficult of a trip this would be. I am just so... ? everything. It’s crazy! I’m so excited to be well enough to go back home!... but at the same time, I know I am really going to miss what has become my “mexican home” too. It’s bittersweet. I know that sounds weird.

So while we spend the days packing, and cleaning, and packing some more... I spend my nights remembering their smiles, kindness and love, memorizing the incredible view of the mountains, thinking about the many miracles that have taken place, and envisioning the looks of pure amazement on everyone’s faces at home when they see me!!!

Heck, I came to Monterrey as someone that even I wouldn’t recognize now!!

My health has not been the only thing that has improved. My life as a whole has as well. My dreams are bigger, my goals may be harder to reach, but I want them more, my memories are sweeter, my heart is happier and fuller and my God, he is greater.

How will these people ever know exactly how much I love them, or how they have changed me?!?

I have a different appreciation and understanding of life now... It always goes on. There will be no ‘goodbyes’ because I know these bonds are lifelong.

Everything is how it should be.

“Do not forget to entertain strangers, for by doing so, some people have entertained angels without knowing it.” (Hebrews 13:2)

....I know I have.

So, for now, see you soon, hasta manana & thank you, for everything.

Love, Jessica

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Thursday, December 1, 2011

I'LL BE HOME FOR CHRISTMAS!!!!!

…and NOT only in my dreams!!!!!

We have booked our flights home!! (Again!)

It had been a bit crazy here with a rough week after I had my bisphosphonate infusion. I had a rare reaction that caused my white blood count to drop very low and I was pretty sick with a fever for 10 days. Thank God I am much better this week and feeling back to my normal (or abnormal?) self again.

Dr. Cantu came over to check in on me and told us that my white count has now recovered- to a more normal level- all on it’s own!! Which is really great news!

We all decided that I will not be having another dose of that medication again. We will figure out something else at a later date.

For now, the most important thing is that I will be able to come home for Christmas!!!

The other day, our great friend Rosemary offered to help us book our trip to save my mom some aggravation.

It was so nice of her. We knew that this was not a small undertaking!

She proceeded to call Delta airlines from her home in Pennsylvania, with us watching her via video skype chat from Mexico (isn’t technology great?!)

A guy named Mike picked up the phone and she spent the next 10 minutes explaining RSD and all of my special medical requirements for the flight.

“I know this is a lot… and there are going to be some problems… ” Rosemary said.

Mike’s response back was quick and in a cheerful voice he said, “No! Don’t worry! On my line, I don’t have problems...I only have solutions!”

He wasn’t kidding!- Within about 30 minutes we had our new flights booked and Mike had spoken with his supervisor about all of the medical details.

Everything worked out- perfectly! Not one problem!

Even better yet, after hearing our story, Mike said he was honored to be a part of my homecoming and completely waved the fee’s that we owed the airline for canceling our previous flights! We would also be able to sit in the 1^st row of first class on both flights! Awesome!

We thanked him for all of his help and gave him the link to this blog, so he could follow my progress and journey home.

Mom and I are still kind of in shock at how easily it all seems to be coming together this time around! We are so thankful, so happy and soooo excited to be coming home! Finally!!!

Please join us in praying that God continues to clear the path before us and for everything to continue to go this smoothly as we make our way home… for Christmas!!! ahhhh! I still can’t believe it!!

See you all very soon!

In God’s Love,

Jessica

"This is what the LORD says— he who made a way through the sea, a path through the mighty waters, who drew out the chariots and horses---“Forget the former things; do not dwell on the past. See, I am doing a new thing!" (Isaiah 43:16-21)

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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.