Jessica's Journey: JESSICA & HAVING FAITH

Tuesday, October 13, 2009

JESSICA & HAVING FAITH

Hi to all our faithful family & friends,

For those of you who didn't see Jessica's story "Counting On A Coma" on Channel 7 - Fox News

Just CLICK on the following link to see Jessica:

http://www.youtube.com/watch?v=PW_vstm0bS8

I hope this day finds you all well. I have been so touched by all the comments about Jessica's interview on TV and her brave choice in allowing her story to be told. I have known, as only a mother can know, how very special a person she has become. God truly blessed my husband and I when Jessica was born on 1/15/88, after five years of hoping and praying for such a precious miracle. Even then, over 21 years ago, we both had to have the hope and the FAITH in God's promises, that we would eventually become parents, and we did! And not only did God bless us once, but two more times with the births of our other two daughters - Katherine and Michelle!!! God is good and majestic indeed!!!

Just as we had the FAITH back then for the blessing of children, we now have to have the FAITH for the blessing of healing for our sweet Jessica.

What is FAITH? Faith is:
Finding
Answers
In the
Trusting of the
Heavenly Father

Faith is a daily battle. It is hard some days to hold onto that faith and to wait patiently for those answers! In Jessica's case, we have had some complex struggles over the past four years. Between the diagnosis of Lyme disease and RSD and other manifestations, it has been a daily struggle to find those answers and to hope and wait upon the good Lord. Yes, when you see the daily problems that arise, it is sometimes hard to remain focused and hopeful, and to look at those "small" positive things. It is hard to try to steer away from those negative thoughts and find the positive ones which are right in front of you!

Our faith as a family, and Jessica's faith in herself and a God who loves her so, is what has enabled us to be able to take this incredible "journey" to Mexico with the knowledge and belief in that "faith". That in the end, HIS will - will be done and we will see our Jessica one day, whole again - not disabled, not lying in a bed 24/7, but enabled, sickness free, pain free, and walking again one day!!! This is our hope and our faith in the ultimate healer - our Lord Jesus!

So, today, we keep the FAITH ( finding answers in the trusting of the heavenly father) for Jessica's miracle, and we pray for all of you to find the faith today, to look beyond the negative things, and focus on the faith of the positive things!!!

Jessica is continuing on the two antibiotics for the infection. They have stopped the TPN due to elevated blood levels and instead are putting her on a concentrated electrolyte and caloric IV formula. We are also trying to increase her soft foods by mouth and our special "angel" Dr. Rainbow (aka Zavala) and Chyo, her helper, are busy making more custards and homemade applesauce and whatever else they can invent in their kitchen for Jessica. Jessica has adopted Dr. Rainbow as her "young" grandmother" because if you could see her, you would see that she doesn't look a day over 65!!! She brings "love" every day to Jessica (except on Sundays - that's her day off!) We are hoping that Dr. Luigi can start the ketamine boosters again really soon - as they are definitely needed - but we have to wait and be patient for the proper timing!

God bless you all, today and everyday.
Keep the Faith,
Jessica's Mom

INTERESTING POST SCRIPT: I blogged today about Faith because it came to me last night while Jessica couldn't sleep. I posted the blog this morning. Then, just at 12 noon, we finally received a card that had been mailed by Jessica's godmother - Aunt Carol. This card was mailed over a month ago from Florida and we often joked about when we would finally receive it. It was postmarked Sept. 10th and we got it today - October 13th - mail to Mexico is slow! The point of this story is this: contained in the envelope was a card to Jessica and I and also a special bookmark - which said FAITH - in big silver letters!!! God does and has worked and has revealed himself so many times and in so many ways! Amen to that!!!

**** To post a comment, CLICK on comments below****

11 comments:

Nancy said...: Good morning Dr. Jessica Stevens, and nurse Mommy.

Just as it takes years for a doctor to go through their training...our Master Doctor is performing his loving works of restoration on you. He is reviving a Masterpiece!!! I love your Mom's description of FAITH!
We are all united as a family of FAITH!

I have to repeat (see below) Barry, Diana and Heather Rose's comment from yesterday because I just listened to the song they posted for you and my heart is so moved I'm speachless. I call this "God's Song to Jessica" now.

Love Nancy

(That is who you are! A girl after God's own heart; looking for Him and His ways. I am so grateful that you know that He is there with you. The song linked here was playing in the background of my mind when I was reading your blog. http://www.youtube.com/watch?v=b3pF6YPxGEw Shared with all the love in our hearts and with hope for the blessings that come for those that wait upon the Lord. Luv, Barry, Diana and Heather Rose); October 13, 2009 at 10:21 AM
Angel said...: Dearest Jessica and Gina, You never cease to amaze me. From those first days at the Wingate and Cecelia and Jimmy's (you are both ANGELS!!), all the way down to Monterrey, Mexico, this has been a journey where you could never have predicted the next step. These days are much the same. God has been working all this time on something big for Jess. We just don't know how or when it will unfold. Hang on to your faith and those next steps will come, along with heaven sent helpers like Dr. Rainbow who are miraculously there at the time you need them. We are all there with you in love, companionship, and prayer, walking alongside you in our hearts. Love you and miss you, Angel; October 13, 2009 at 11:00 AM
Aunt Carol said...: Dear Jessica and Sara... The TV airing of your journey was truly amazing. I will never forget how well you handled that interview in Tampa with the News crew. The news station really did a great job...but they couldn't have done it without you. I truly know how hard it is to maintain a positive attitude with all that is going on. The reason I chose the FAITH
bookmarki was to continue the hope and dream of our future. Without FAITH we have nothing. For you to have received that card with the FAITH bookmark on this day is truly a sign. I never thought the card would arrive..and I never told you about the bookmark. They say that sisters have a connection that no onecan explain...maybe this isoneof those connections. I know that I feel your pain each day and pray that we will be together soon. I will keep the FAITH...I love you both.............Love, AUNT CAROL; October 13, 2009 at 2:05 PM
Angel said...: Hi again Jess and Gina, Hehehehe! In my comment above, I meant after Cecelia and Jimmy, WHO are both ANGELS!! However, you are both ANGELS too!! Love and hugs, Angel; October 13, 2009 at 2:37 PM
Sandra said...: Hi Jessica & Gina...as is customary, when Cecilia visits me, she gets fifty to one hundred visitors of her own (she's a rock star wherever she goes)...anyway, she shares your story with everyone she comes in contact with so know there are at least fifty to one hundred additional prayers for you in the last few days...she came to see me for my birthday, which is tomorrow...so, in lieu of my annual wish for a million dollars, I mean, world peace, it is my birthday wish that God continue to watch over you and give you all the strength and peace that you deserve...I love you both ladies...; October 13, 2009 at 6:01 PM
Consuelo Bustamante said...: Gina y Jessica, estoy pidiendo le a Dios poderoso que mi Dios te de mucha fuersa y a tu hija mucha salud...estoy pensando regresar a Colombia y de pronto te aparesco en Mexico, pero no te hagas muchas illuciones...pero voy a hacer TODO los posible...asi sea para hacerte reir unas horas y acompanarte...te quiero mucho!!! Consuelo!!!; October 13, 2009 at 6:06 PM
Cecilia said...: Hi Gina, Hi Jessica, it looks like I'm coming the 24th...shopping around for my ticket...que Dios las bendiga, love, Cecilia; October 13, 2009 at 6:07 PM
Anonymous said...: Keeping in the Faith that Jessica will be healed! Crystal; October 14, 2009 at 8:31 AM
Anonymous said...: Hi Sarah and Jessica,
I don't know you but I love you both. You are inspirations to all who know you...I'm sure and all who wish they knew you. I pray for you and for the faith that you have.
C and D's friend S; October 14, 2009 at 8:59 AM
Anonymous said...: Hi Sara,
The TV interview was awesome and so is your daily blog...full of inspiration for all of us here. I have an update on Jessica prayer list and sent them all the links...surely Jessica continues to inspire many as she continues to touch lives with her story.
You are both a beautiful Blessing from God...May He always Bless you!
Love
Angela & family; October 14, 2009 at 1:53 PM
Anonymous said...: Dear Jessica and Gina,
"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
"The movement toward genuine faith is marked by choosing to trust God even when we know the outcome may be different than we had ever imagined. We let go of our preconceived notions of how things ought to be. If life is a river, we jump right out into the middle and let it take us where it will." from a devotion by Paula Rinehart
You both have that kind of faith.
God Bless,
Linda Wardley; October 14, 2009 at 2:27 PM

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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.