Jessica's Journey: ***Jessica Is A Star***

Saturday, October 10, 2009

Jessica Is A Star

Hi to all,

For those of you who didn't see Jessica's story "Counting On A Coma" on Channel 7 - Fox News Miami, or were having difficulty getting to the link, my husband set up the video in You Tube.

Just CLICK on the following link to see Jessica:

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

UPDATE ON JESSICA:

I heard thru so many people how impressed everyone was with seeing Jessica's story on T.V. She has certainly touched so many lives by telling the world what it has been like for her these past few years and raising awareness for RSD and Lyme disease and the complications that both illnesses can cause!!! Jessica was able to hear the video link in her hospital room here in Mexico but is still unable to see it without seeing the "static" that has been plaguing her! The tests on her eyes revealed a small alteration with diminished velocity in the myelin sheath in the brain. The neurologist, Dr. Romulo , believes that her vision will be restored eventually, but whether it will be days, or months, is uncertain at this time! Also, the causative agent is unknown. As you can imagine it is very distressing for her to say the least!

Also, Dr. Cantu has decided to go forward with her ketamine boosters and she has received # 3 & 4 in the past few days. These boosters are essential for her recovery and it is their "weapon" of choice here; especially since some of her lesions are returning on her arm, as well as some of her pain.

SPECIAL REMINDER - FUNDRAISER TONIGHT:
Fundraiser for Jessica's Journey tonight at the Garden City Firehouse - 347 Stewart Avenue - Garden City, N.Y. They will be serving light food and refreshments and selling tickets for different types of raffles. It will be held from 6-11 PM. If you cannot attend, donations can be made to: Jessica's Journey Savings Club and sent to: Carol Biron - 14505 Indigo Lakes Circle - Naples, Fl. 34119 and Thank You All for your support!!!

We hope you are all well. Remember that every journey begins with small steps. We continue to follow the course here, to the ultimate goal of getting Jessica's life back! We are humbled by the outpouring of love from our family, friends, and even complete strangers! We also know that without the love of our God, who strengthens us and ultimately heals us, this journey could never have been made!!! May God bless you today and always!

All our love from Mexico,
Sarah & Jessica

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

10 comments:

barbschaffer said...: Saw Jessica'sr story on fox. After 22 years with RSD, understand her choice to try the coma and hopefully with time and continued treatment her RSD will be gone or at least well controlled

I had a period of no pain after seizures and being kept in a coma for 5 days in 1993. A different med which we know doesn't stop the pain but I had 3 months without pain. I just want ou to know that even if the pain returns it probably will be different and ho[efully much less In these 22 years I have found that the condition changes and no matter how hard it is we have to try and adapt to the changes. Now Jessica is traveling the ketamine path ad hopefully all of her dreams about it will come true.
Barbara Schaffer; October 10, 2009 at 10:33 AM
Angel said...: Dearest Jessica and Gina, I just saw the Fox 7 report on YouTube (thank you so much David for putting it up!) and I am touched beyond words. Thank you for sharing your story. There may be people out there who saw it who can now feel that they're not alone in their pain, and others who can put a possible name to what they are going through. Jess, with your determination, honesty, and strength, you are truly an inspiration. Gina, your devotion to Jessica's care and health, and visions of her healing and her future, are what's keeping us all going. You, my friend, are absolutely amazing. We will be at the fundraiser in GC tonight. Hang in there! Praying and thinking about you all the time. Love always, Angel; October 10, 2009 at 11:32 AM
Anonymous said...: Your strength is amazing and you are more than an inspiration. I pray that the treatment goes as planned. May God Bless You and Your Family.; October 10, 2009 at 11:48 AM
The Tips Guy said...: Hello Jessica, I pray that God heals you completely. And that you can use this experience to touch others as you are now, but especially after this chapter of your life is in the past.
Press on friend. My family and I are praying for you.; October 10, 2009 at 2:35 PM
Anonymous said...: Hi Jessica & Sarah Gina,

Happy to hear the dr said eye site will return,will pray for it to return very soon! Aslo happy to know the K boosters are back into play, I was worried about that & praying you'd be back on track with that,sooo YAHOO!You are both the bravest people & every day I am more amazed by you strength! Shine on beautiful girls!
To your Family & Friends in N.Y. tonight I wish you great success with your fundraiser!We are all pulling for you here in Naples,Fl.
PEACE XOX Jodi; October 10, 2009 at 3:12 PM
Sustersics said...: What great news about Jessica's eyes!! So excited for the day you will TYPE....it's BACK!!!

We can feel the energy all the way down her on Marco Island... of the love and prayerful efforts as the FUNdraising begins!! Thank you dear NY friends and have one for us.
Joe & Nancy; October 10, 2009 at 5:54 PM
stephanie said...: Jessica - the Davis Family in Marco Island is pulling and praying for you. We believe in miracles - and we believe you are one.

Hang in there and keep dreamin' big - Olivia's family; October 10, 2009 at 9:19 PM
Anonymous said...: Jessica and Gina, saw both of your beautiful faces on TV. So glad you were willing to share your story with the rest of the world. Now everyone can see your amazing strength and persuit of relief for your suffering. Went to the fundraiser tonight. Great turnout. I know you were both there with us. Love, Bonnie; October 10, 2009 at 9:20 PM
liz said...: I am one of Devon's many cousins and my Aunt Cathy sent a link to your TV interview. Your blog is great and probably a lot of work for you but helpful for loved ones. I liked reading it and have not met you!
My family loves the emails we get full of details of Devon's recovery.
Hopefully things continue to go well for you and your family. We are all praying for everyone down in Mexico.
Liz Musolf; October 10, 2009 at 10:31 PM
Felix said...: Hi Jessica, I have been fighting the fight of RSD for ten years now, although mine is not as severe as yours, I know what you are going through.

My Prayers are with you that this Treatment will give you some relief. In your own words "This is no way to Live".

We just need to continue to get MORE people and especially Doctors to recognise that this those exist.

God Bless you and "NEVER GIVE UP"

Felix; October 17, 2009 at 9:04 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.