Jessica's Journey: 15,000 Views of Blog!!!

Monday, October 12, 2009

15,000 Views of Blog!!!

Hi everyone,

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 you are all well. Jessica is doing well on the antibiotics for her J-tube infection. Dr. Luis (or Dr. Luigi - as Jessica calls him) is the doctor in charge while Dr. Cantu (or Dr. "Green-Shirt") is away at a
pain conference. She continues to be able to move her left leg with a little more ease and she is able to touch it without feeling pain! Her vision is still bothersome, but we just have t0 be patient and believe as the doctors do, that it will be restored! Everyday has its own new set of challenges, some good, some not so good, but, we have seen the miracles that have happened here with the ketamine study and we just have to believe that God, through the doctors here in Mexico, will perform one of those miracles for our Jessica!!! We saw it first with Emily Wilford, and then with Fern Kwantes, and then with Justin Brown. Yes, the roads to wellness were different in every case, but, just as we are all different, so to are the paths taken by each coma patient in this study. I guess what I am trying to say is that even when it may seem that "the chips are down", you somehow have to remain hopeful in the ultimate goal and try not to lose sight of that! I will be honest in that some days are definitely harder than others, but you have to have the hope and remember those who came and left before you! Currently, it is only Jessica and Devon Emmanuel who are still here traveling their different paths to living a pain free life. Please pray for these two young woman, as only they can do the hard job that is ahead of them! Also, pray for the Moms & Dads who travel here with their loved ones on that quest. We, Cathy Emmanuel and I, who are still here, and those that left before us, need your daily prayers as well! May God bless you all and keep you safe and healthy!!!

All my love,
Jessica's Mom

P.S. I would like to personally thank Mr. Ben Perez from the Union Church in Monterrey. He answered Pastor Longs' call for anyone that was going to Texas and he picked up our boxes that were there! Jessica is now so much more comfortable on her special bed pad that was contained in one of the boxes! Thank you Mr. Perez for all of your help! May God bless you and all the Mexican people who have come to our aid!

Also: We came up with this for our sweet Doctor "Rainbow":
*****Rainbows Bring Promise, Hope & Beauty*****

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

10 comments:

Unknown said...: Hi Jessica, We're Devon's Aunt Ro and Uncle Steve. We met your mom when we were in Mexico a few weeks ago and watched your video a couple of days ago. You are an awesome young woman and we pray every day - as we do for Dev - that your life will shortly be given back to you. Through the darkest days, stay strong, think positively and believe that the future will be bright.; October 12, 2009 at 12:33 PM
Unknown said...: Hi, Sarah and Jessica,
This is Gloria. I just left your hospital room and am looking forward to visiting again. You are both such warriors and I am in awe of you both. I look forward to seeing you both on Wednesday. God has a plan and if he can use me as his servant to help you in any way, then I am truly blessed.
Gloria; October 12, 2009 at 1:49 PM
Anonymous said...: Hi Jessica and Mrs. Stevens,

We celebrate with you on the good news of improvement in Jessica's left leg. I know it is difficult to focus on such a seemingly small step in the right direction and there is still so much to be dealt with. There were days Mom and I struggled to find the positives. But just as you said, we never loose sight of the ultimate goal and the progress (though painfully slow at times.) One of the keys for me, Mom and I found was focusing on all the little things. Any positive thing we could find, and make a HUGE deal about it. Sometimes you would have thought I would have won a gold medal in the Olympics we celebrated so much. But you know, looking back on these times, I think that really helped my brain move on and understand that things ARE changing. Things are getting better. Even if it is something as minor as less redness with just as much pain, that is a good sign. And then focusing on that, pointing that out to your brain, really helps the progress. Especially over the long term.

Praying for you guys!

Love in Christ,

Lindsay Spengler; October 12, 2009 at 4:36 PM
Anonymous said...: Hello Jessica and Mom,
I am Sarah P.'s Mom. I have been praying that all will turn out well. Jessica has been in my prayers for a long time. My Sarah is considering the Ketamine drip here in the states. Her neuro doc does it. Mom keep the faith, I know that it is hard, and sometimes almost impossible, but I know you are a great mom and comfort a to your daughter. May God bless you both, VaughnDe P.; October 12, 2009 at 10:11 PM
The Tips Guy said...: Hello Jessica 7 Mom,
I am checking your blog daily to learn about how you are progressing Jess. I pray strength and patience.
I am praying for you daily.
Let me share what my Pastor said this weekend.
"My land of afflictions was in reality my land of fruitfulness" ~Bob Coy

If you get a chance, check out this video or audio message entitled "You got a problem?"

Description of message:
Life is filled with problems. Problems come in sizes, intensities, and lengths. Problems have a purpose and a solution. God uses problems to grow us into His image. This is not our home. Heaven is our destination.

Link to message: http://www.calvaryftl.org/AWMedia/MediaDesk.cfm?fn=A1513; October 12, 2009 at 10:33 PM
Hilde said...: Hello,

I saw the repot on Jessica last week in channel 7, and was moved by her story. I am 24 yrs old, and tried putting myself in Jessica's position and immediately felt sad to just think of all of the experiences that she has not had the opportunity to have because of this disease. I was also amazed at how brave she was to make the decision to go into a coma. That takes so much courage, I'm not sure that I would be able to make such a difficult choice. I am praying for her, that she has the chance to live a fruitfull life and will be following this blog to check on her progress.

God bless,

Hildegart H.; October 13, 2009 at 12:17 AM
Anonymous said...: Dear Jessica and Sarah Gina,
You continue to be the greatest example of the precious love between a parent and a child. I am so proud of both of you and how much you are there for eachother. I love you both and hold you tight in my thoughts and prayers every day.
Nita; October 13, 2009 at 12:42 AM
Qst4faith said...: This comment has been removed by the author.; October 13, 2009 at 1:32 AM
Qst4faith said...: Dear Jessica and Mom,
This is Heather's mom writing to tell you that we are holding you up in prayer for every heart's desire noted in your loving blogs. What an amazing young woman you are Jessica. You are a warrior. Not one of us can know what this has been like for you w/out having tasted and touched it ourselves; but we know the drastic measures that Lyme can push us to, given the extreme variables that come with each one's journey. It connects our hearts in a way that we can empathize with one another and in faith, hold each other up. It takes a refined faith to appreciate the glass that sits in front of us - half full. 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 1:35 AM
Anonymous said...: Onward and upward, my little Mexican beauties. Positive things ahead.My prayers are always with you. Ithink of you both every day and the positive steps that Jessica is taking. She is such a special person. Love you, Bonnie; October 13, 2009 at 7:11 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.