Jessica's Journey: SPECIAL THANKS

Sunday, October 11, 2009

SPECIAL THANKS

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

Hola from Mexico,

Special Thanks go out to ALL for a successful GCFD Fundraiser!!!

In 1991 my husband David joined the Garden City Fire Department as a volunteer fireman. He wanted to serve in his community and also, because he was an only child, he thought he could have the "brother" he never had! However, he never imagined that by joining the fire department it would immediately gave him over a 100" brothers" and even a" sister"!

The fire department is a true "brotherhood". They have been there countless times for us over the past few years. First with David's illness and now with Jessica's unbelievable quest!

The fundraiser that they organized Saturday night was successful because of the bond these fire fighters have for each other. I would like to thank the following fire department personnel for making it so successful:

Special thanks to Chief Bill Graham for allowing it to be held, to Chief Bill Castoro for being the guiding hand behind the whole event and to Chief Joe Nadolny, Captain Matt Tittler (and Viki), Ex-Chief Len Rivera, ex-capt Frank Diamond, Greg Young, Jen Marinello and Jake Finneran, Dave Hroncich, Andy Smith, Mike Reale, All Of The Juniors and Tom Riccio, Karen Castoro and Marianne Quinn. Also, thanks to Pat Server & Angel D'Antonio for their help!

And, of course, thanks to all of YOU - our friends - who came to the firehouse to support us in our time of need. Words cannot express how grateful we are to all of you! I was so happy to "Skype" from Mexico and see you all to thank you personally! Jessica says thank you so much for all the outpouring of love, She heard you all clap for her!

Remember this: When Jessica and I finally leave Mexico and return to the USA, it will be because of all of you! Whether you donated in Garden City or Naples, both fundraisers were a huge success and we will be forever grateful for all you have done! May God bless everyone with good health and happiness always. And, if there is anything that we can ever do for you - just ask - and we will be there for you!!!

All our love to all,
Jessica's Family

UPDATE ON JESSICA:
Yesterday was another eventful day here in Mexico. Right before the fundraiser was to begin, Jessica had to be brought down to the ICU for a procedure due to an infection in her J-tube. She is back up in her room and because of a low grade fever, Dr. Luigi put her on antibiotics and decided to give the J-tube feedings a break and just keep Jessica on TPN and whatever she can tolerate by mouth. As I have said before, it is always an adventure when Jessica is in a hospital! Please pray for a speedy resolution to this infection!

Till tomorrow,
Jessica's Mom

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

6 comments:

Sandra & Cecilia said...: Morning ladies...so Cecilia is here with me and already is planning our day (shocking)...we watched the fox news video on you tube again, Jessica, I thought you were a natural blonde...hmmm....don't worry, Cecilia's on her way =)...we miss you and we're praying today as always....Sandra & Cecilia; October 11, 2009 at 9:27 AM
Anonymous said...: Mrs. Stevens & Jessica,
I have posted the YouTube link on my company's webpage.....I figured the more people hear about your story , the more prayers and awareness of the disease.Jessica, since meeting you, I have transported 3 patients with RSD! I am anxiously awaiting for the day you fully recovery.......no doubt that day is coming soon! Faithful in Prayer, Crystal; October 11, 2009 at 10:13 AM
Anonymous said...: Hi Jessica and Mrs. Stevens,

I watched the news interview. Jessica, you did great! I know it took a lot for you to do that and so appreciate the courage displayed on the behalf of both of you. For all RSDers, we are grateful. The more awareness that is brought to this terrible disease, the better it will be for those that come after us. And hopefully then, no one will get near as sick as you and I had gotten.

I continue to think about you both all the time and you are in my constant prayers.

Both Mom and I send our love.

Love Always,

Lindsay

Jessica- I got to go to the beach for the first time in over nine years. I thought about you guys and hopefully, Lord willing, one day we will be able to walk on the beach together. I look forward to that day!

Love In Christ,

Lindsay Spengler; October 11, 2009 at 4:57 PM
Cindy said...: Jessica and Gina,

Please know that you are in my daily prayers and that your entire church family at Resurrection, Garden City is praying for you all the time. The Youtube video was incredible. You are an inspiration.Jessica, I pray with each day,you will make miraculous strides toward fullness of health.
Gina,your love, faith and courage are extraordinary.God bless you both.
Love to David, Katherine and Michele.
With much love,
Cindy; October 11, 2009 at 10:09 PM
Nancy said...: Hi Jessica and Sarah Gina!

Today Joe and I went with Jodi and her hubby Michael and our friends of the Baby Boomers Meetup Group to the new movie theatre in Naples. We saw "Couples Retreat" and it was very funny but guess what....They sang the song that you two sing together. The one about the tree. Made me homesick for being there with you! I don't think I had ever heard that song before you two singing it, and there it was in the movie!

God is so powerful and is working miracles on Sweet Jessica's eyes, I can just feel it!!!

What a wonderful group of friends and family you have, especially in NY....God Bless them all for the gifts of Love and caring they have shown for you in the terrific FUNdraiser yesterday!!

Sounds like Cecilia can't wait to get to Mexico! I'm happy about that!
Love Nancy; October 11, 2009 at 10:48 PM
Anonymous said...: Hi Jessica & Sarah,

You did an awesome job in that video! As you struggle to heal, there are so many of us learning...thank you and your mom for teaching us.
I think of you and Devon everyday...praying that your beautiful sparks will become brighter and stronger. You have been and are enduring so much...
I wish you courage and faith.
Hugs & kisses to you both...and to Cathy & Devon too!

With love & prayers,
Colette (Devon's cousin); October 12, 2009 at 2:30 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.