Jessica's Journey: 2 Months In Mexico!!!

Tuesday, October 20, 2009

2 Months In Mexico!!!

Hola from Mexico,

TO VIEW JESSICA ON FOX TV - CLICK ON LINK:

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

Can't believe we have been here in Mexico for 2 months - what a journey it has been! I remembered how it felt when we first got here. There were so many different emotions going on. From nervousness to hopefulness, from scared to excited, for the road already traveled - to the road up ahead - it has been an amazing quest for Jessica! She is definitely the strongest person I know and I am so proud of how she has handled everything she has had to endure and so much more proud to be called her Mom - I have been truly blessed by God indeed!

Jessica is currently still having fevers and is on two antibiotics and an anti-fungal medication for the infections. She is still experiencing low blood pressures and the "static" vision is still plaguing her as well. She describes it as looking at a TV that is having a bad connection and all you see is the "static" on the screen. We are hopeful that, in time, her vision will be restored, that the infections will clear, the liver levels will stabilize, and that then we can resume the ketamine boosters that are so necessary for her treatment here in Mexico!

The following was written for Jessica by her 13 year old sister Michelle and was sent to her via the blog:

Hi Jessica, it is Michelle, I just wanted to say hi and that I miss you..I also wrote you a poem in creative writing...

JESSICA

My loving caring sister-
2 years old...
I couldn't say Jessica
I called her Wessie

She is pretty-
brown hair
green eyes
a bright smile
a warm heart

She sometimes gets on my nerves
the BIG sister
getting attention
born first
the favorite

She is my best friend
hide and seek
board games
I love her because...
she is my sister!

What a lovely poem to mark this 2 - month anniversary here in Mexico. I must say that we, as a family, could never have imagined taking a journey like this! Who would have ever thought that we would have to travel to Mexico for an experimental ketamine coma study to try and rid Jessica of the horrible burning pain that is associated with RSD! The doctors, especially Drs. Cantu, Kirkpatrick, & Schwartzman, who have devoted their lives towards this illness, and the people of Monterrey, have been so amazing! We are forever grateful to them for giving us this chance at a life for Jessica and all the other coma patients as well! We are determined, even with all the setbacks, to remain on the path to wellness, that God has laid out for us! Stay well and remember - Never Give Up!!!

***Special Birthday Wishes go out to Cathy Emmanuel today. She is a fellow coma patient Mom who is here with her daughter Devon. I could not have survived as well as I have these past 2 months without her support and friendship! Happy Birthday Cathy!***

With love,
Sarah Gina
(Jessica's Mom)

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

8 comments:

Anonymous said...: Michelle,...... That was such a sweet poem for your big sis!
Jessica, I hope today finds you free from fevers and pain. I will pray extra hard for you! Crystal Ulmer; October 20, 2009 at 8:08 AM
Nancy said...: Michelle, What deep love radiates from your poem. You are so gifted...and beautiful! I'm sure Molly is so happy to have you taking care of her while Jessica and Mommy are away getting well again!

Cathy, Happy Birthday from Devon's Hall Exercise Buddy...Nancy

Sarah Gina, Our Lord has a special name for people like you-"ANGEL of Love". Your words empower me to stay strong in my belief.
:); October 20, 2009 at 10:21 AM
Felix said...: Jessica, I have you in my Thoughts and Prayers.

I have shown everyone I can about you. The more Prayers the better...

God Bless You and your wonderful Family,

Felix {Also RSD Patient}; October 20, 2009 at 10:23 AM
Angel said...: Hi Jessica and Gina, How amazing it is that you have been there two months! So much has happened in that time. It is like you are in a car and God is the driver. He is taking you on a trip where only He knows the road. He is taking you up steep mountain roads and into dark valleys and around some hairpin turns. Keep hanging on! You know with your heart and soul that God knows the road and will keep you safe. Yours is the kind of faith that moves mountains and invites miracles. We who are praying for you and your whole family are amazed at the mountains that have already moved and, encouraged, want to help to move more in whatever small way we can. You are in our hearts and thoughts always. Hang in there!! Love always, Angel; October 20, 2009 at 11:09 AM
Anonymous said...: Saratoga has you on the prayer list.
Linda; October 20, 2009 at 4:28 PM
Anonymous said...: Luke 18:1
1Then Jesus told his disciples a parable to show them that they should always pray and not give up.

With love & prayers,
The Turners; October 20, 2009 at 5:25 PM
paulette said...: dear sarah'
i miss and love u very much you are my best friend and i pray for you and jessica every day and i miss you everyday and i hope you have some luck i know it is not an easy journey and i miss and love you both very much!!

hugs and kisses,
Paulette; October 20, 2009 at 7:18 PM
Anonymous said...: Sarah and Jessica, thank you, thank you for making my birthday here in Monterrey special. I love the silver heart earrings, a memento of you both and our friendship born of our unique circumstances at San Jose Tec Hospital. Also, for helping Devon commemorate her Mom's birthday by finding fabulous fresh water pear earrings and bracelet from the gift shop downstairs. Lastly, for my book and scrumptious Chinese food for the birthday dinner!!
Love, Cathy and Devon; October 21, 2009 at 10:22 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.