Jessica's Journey: Happy Thanksgiving to all of our family and friends!

Thursday, November 24, 2011

Happy Thanksgiving to all of our family and friends!

We want to wish a blessed Thanksgiving to all!

I don’t know of anyone who has more to be Thankful for this year than our family does.

We have been overwhelmed by the amazing mountains God has moved to allow Jessica to be able to receive the treatments that have been so successful for her and to be cared for by Dr. Cantu, who is dedicated to her complete healing.

What I have come to know and believe is that we have been truly surrounded by very compassionate people. Truly compassionate people are often hard to understand. They take risks most people would never take. They give away what most people would cling to. They reach out and touch when most would hold back with folded arms. Their caring brings them up close where they feel the other persons pain and do whatever is necessary to demonstrate true concern.

Through this journey, God has been our strength—but YOU have all served as his body, his hands and his feet!

Today (and everyday) we thank Him for the truly compassionate people in our lives- our amazing family, friends, church family and community- and all of what you have done for us- I don’t know how we will ever to be able to thank each person who has helped to make Jessica’s recovery possible, but we will find a way! We know we have been so blessed!

So, this Thanksgiving, we want to personally thank you all for being those “compassionate” people and may God bless you all today with a bountiful feast and a truly blessed day!

In God’s love, always,

A most thankful Mom,

Sarah

The LORD is my strength and my shield; my heart trusts in him, and he helps me.
My heart leaps for joy, and with many songs of thanksgiving, I praise him. (Psalm 28:7)

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6 comments:

Anonymous said...: Dearest Jessica, Gina, and the whole Stevens family, Happy Thanksgiving!!! In this season of reflection and gratitude, we give thanks that Jessica is doing so well and that prayers have been heard and answered. The Lord's blessings are always around us, so often do we take them for granted-- but you are truly a family that appreciates the blessings, sees them for what they are, gives thanks for them, and passes them on to others. You are very special not just to me but to so many others around the world!!!! We think of you and pray for you all the time. We are so thrilled about the good news of your feeling better, Jess!!! I just wanted to let you know that we are thinking about you today and always!!! Hugs to all!!! Love always, Angel xoxoxoxoxoxoxo; November 25, 2011 at 12:33 AM
Rosemary and John said...: Dear Sarah, Jessica and all the family,

It is hard to add anything new to the words written above by 'Angel', so well expressed.

We join so many others today in thanking God for bringing you into our lives. You have enriched our lives just by knowing you. Thank you for being a continual source of hope, Faith, strength, humor and true love.

We feel honored to be witness to your recovery Jessica. Your Mom and family are the most devoted we've ever known. The medical profession should be setting new standards of care using your doctors as their model. God brought you there because He knew, this was the place for your healing.

We are in awe of your amazing journey taken in thousands of "baby steps" which each day brings you one step closer to your U.S. home.

With much love and many prayers,

Rosemary and John; November 25, 2011 at 3:37 AM
Fern said...: I wonder if you had the doctors over for dinner again this year?
You are an inspiration to all of us. I guess we all serve each other even when others are ministering to us, we are ministering to others. God uses the faithful and He has definitely used you all!
Hope you had a wonderful Thanksgiving day and looking forward to seeing what God is going to do next!; November 25, 2011 at 12:58 PM
Anonymous said...: Dear Sarah and Jessica,
We are truly thankful to be blessed to have you as our friends. When we have the opportunity to visit with you in person or from "far, far away" we are so very happy to have spent time with you. Sometimes it feels like we have known you for many years - I think because our girls have a special connection (not only RSD - I think they would be good buddies even if they met under different circumstances!)
Wishing you a very happy Thanksgiving and the start of a blessed holiday season.
Love,
the Jarvis gang; November 27, 2011 at 9:25 PM
Mike chester said...: Jessica and Sarah,
This is the guy that booked your flights home. First I want to say that it was my honor to be the one to assist you in the ordeal. I only hope that during your connection you have enough time and no hassles. I tried to my best, but I am limited as to what I can do. I will follow your story and continue to pray for you all. I live in tampa myself and can only hope and pray that your ordeal will soon be over. GOD Bless you all and may you have a safe journey home.
Mike; November 29, 2011 at 9:33 PM
Anonymous said...: hey there i read your story and was amazed by it and you!!i hope you have a lovely christmas and new year.lort. trolfrans@googlemail.com.; December 6, 2011 at 12:53 AM

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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.