Jessica's Journey: January 2012

Sunday, January 15, 2012

HAPPY 24th BIRTHDAY JESSICA !!!

Dearest Jessica,

Today is your birthday! 24 years old!

HAPPY BIRTHDAY!!! FELIZ CUMPLEANOS!!!

How do I even begin to tell you how I feel in my heart about you? I have truly been blessed by God to have you as my daughter and to be called your Mom!

It is often said that the journey of a thousand miles begins with one step....and oh, how true that saying is for what you have endured these past years. You have taken many "steps"--- sometimes forward, most times backward, some small, some big, most hard and some unimaginable! But through it all, you have shown to me and all who have come to know you, how truly strong, courageous, special, and amazing you are!

I remember many years ago, before you were born, how I couldn't wait to meet you. When God blessed me with you I was the happiest person in the world. You were my little bit of heaven, my little Angel, sent from God above! The love I felt for you was overflowing, just like the water in the sea. I never imagined that I could feel so much love.

Through the years, you have never ceased to amaze me. These past few years you have been nothing short of incredible---I stand in awe of YOU!

As I sit here writing this special letter to you this year, we are finally blessed to be back "home". Home here in Florida, with your Dad, sisters, grandmother, aunts, uncles, cousins and friends. God continues to bless us in so many ways. You see, in this "journey" that we have been taking, we have had to call many places "home", as I think of where we were last year at this time and Mexico was our home away from home.

But in each and every place we have journeyed, you have shown to everyone what "strength under fire" is. What you have had to endure, no one should ever have to in their lifetime, let alone in just a few years! Your tenacity and belief in a God that would be there with you every "step" of the way, was just incredible. You are a living example of what unwavering faith in God, hope in a brighter tomorrow, and unconditional love is all about!

My prayer for you this year is for you to experience all that you have missed in the years that you have been ill. I want you to have all the things you couldn't have or even do because of the pain that robbed you of a life you should have had; the life that God originally intended it to be.

Jessica, you are and have been ALL that I have ever wanted in a child! You have taught me a greater love and it is you that gives me a special reason to wake up each morning. You are my sunshine on a dark day and your smile brightens up every room you are in! I promise you that I will help you to see the world that you have missed during your illnesses and that I will always be there to hold your hand as you face each new day, just as my Mom, your Grandma, did for me.

So Jessica please even though we know that the world isn't perfect, and that you may "fall" from time to time, do not worry because I will always be there to "pick you up" forever and always.....

I love you very much and I am so proud to be called your Mom and honored to take this journey, step by step, with you. Remember, small steps---huge advances, as Dr. Cantu always says!

Happy 24th Birthday Jessica! From the very first, I have admired you, enjoyed and been so proud of you. And as the years go by, my love for you only grows deeper - my honest, amazing, inspring, truly original daughter! May God continue to bless your "steps" and keep you safe and warm and may you finally be able to enjoy your "new" life!

All my love, always,
Your Mom Sarita xo

Numbers 6:24-26
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.

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Tuesday, January 3, 2012

Happy 2012!

Happy 2012 Everyone!

Yea, I know I am a few days late... but I have been so busy enjoying this New Year with my family that I have not had a chance to sit down and write! :)

I started out New Year's Eve morning by making Italian cookies with my Nanny from her very own recipe!

These are "Nanny Yum Yum" cookies! They turned out beautiful and were soooo delicious!!

I than got to watch my daughter/dog Molly take a bath!! We couldn't let her start out the new year smelling bad! I had forgotten how CUTE she is wet!

After her bath, we all sat around outside by the pool to let her dry in the warm Florida sun.

It was a wonderful day! I know these things might seem silly to be making such a big deal over.... but THESE are the visions I had in my mind that kept me going through years of illness.

These memories are the reason I wanted to live!

Later that night, as we counted down to midnight, everyone took turns giving me giant hugs and a lot of kisses!

Grandma hugging her "miracle" at midnight

Watching the ball-drop, together, was very emotional for us. Being home, I am realizing more and more just how much my illness and our time apart has affected everyone… on many different levels.

I know it has not been easy and everyone has dealt with it differently. But this year, I feel more blessed than ever to be a part of this amazing family!

I hope they always know how much I love them and appreciate the sacrifices that have been made to allow me to make it into this New Year with them!!!

I LOVE this family!!!!

Near midnight, I made some special calls to my 'Mexican Family' to wish them a Feliz Año Nuevo! I even got to skype with Dr. Rainbow and talk with Dr. Cantu, Dr. Luigi and Cindel!

They are all always with me in spirit, as evidenced by our scrabble game... Dr. "Green Shirt" Cantu is never too far from our minds!!

After the ball had dropped, we all went outside and made a lot of noise and lit sparklers!

...Maybe some of us went a little more crazy than others... :)

We got to watch our very own "personal" fireworks show that a neighbor across the lake was putting on!

It was a perfect way to ring in the New Year!

New Years Day I was surprised with a very special visit from our dear friend Cecilia, her daughter Sandra and her new baby, Benjamin!

To get into the whole story of just how special Cecilia is to us would take up several pages. She is one of many people who has been a true God-sent angel to us and we love her so much!

Cecilia has seen me at every stage of my illness from Florida, to New York... even all of the way to Mexico, where she came to visit me and help us in 2009!

She was SO amazed to see me now, so well, able to do so much! She must have told me over 100 times how happy she was and how she just "can't believe it!"

Needless to say, having her, her daughter and her new grandson, here in my home with me, celebrating health, happiness and new life, was a perfect way to start out the new year!

None of us can ever know what the future will hold, but we can rest assured knowing WHO holds the future!

I would like to thank all for your generous support and love! 2012 is off to a great start for me and I believe that this is going to be an AMAZING year!! ....A year that would not have been possible without so many of you!

Feliz Año Nuevo!!

HAPPY NEW YEAR 2012!!

In God's love,

Jessica

“Remember not the former things, nor consider the things of old. Behold, I am doing a new thing!" (Isaiah 43:18-19)

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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.