Jessica's Journey: THE NECKLACE IS HERE!!!

Monday, November 23, 2009

THE NECKLACE IS HERE!!!

Hi everyone,

TO VIEW JESSICA ON FOX TV - CLICK ON LINK:

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

JESSICA'S NECKLACE IS NOW AVAILABLE!!!

This necklace has been dedicated to Jessica's struggle with Lyme Disease and RSD by Lymelinks Jewelry. It was made to honor her commitment to Lyme Disease Awareness. All proceeds from the sale of the necklace will go to Jessica's Journey Savings Club. It is available now and just in time for Christmas & Holiday gifts! Visit www.lymelinks.etsy.com or just click on the link below. Jessica and the entire Stevens Family would like to thank Brian & Michelle Mah from Lymelinks, who created this necklace, as well as Cat Charles, Laci Corridor, and everyone else that made this necklace possible! May God bless you all!!!

CLICK ON THE LINK BELOW TO ORDER:

http://www.et...sy.com/view_listing.php?listing_id=34995115.

Update on Jessica:

Jessica would like to thank the Mah family for such a generous outpouring of love and for such a wonderful job they have done with the necklace. She would also like to thank Cat Charles for remembering her in this special way and for Laci Corridor and everyone else for all their hard work as well. This is the first time that Lymelinks is "adopting" a patient with all the proceeds going towards helping with Jessica's medical bills through the Jessica's Journey Savings Club.

As you know, we are still in Mexico undergoing treatment for RSD with ketamine. It has been a struggle and their have been setbacks, but we remain hopeful that we can see a miracle unfold for her. Jessica is a fighter. She will continue this journey with her inner strength and faith in God to see her through! But, at the same time, she is constantly strengthened by the love from all of you - and she wants you to know how thankful she is and how appreciative she is to all of you as well! Her battle is a daily one; fought against two foes: RSD and Lyme. The hope is that one day, through research, they will find a cure for both illnesses!!! Let us all pray for that!!!

Pray for Jessica today as she receives another ketamine booster for her pain, especially on the entire right side of her body. Also, pray for her "static vision" to go away, so that she can see normally again! Also, pray for the severe headaches to go away and with that the extreme noise & light sensitivity as well. Pray for increased movements in her legs, so that one day she will be able to walk again!

Remember this: With each new dawn there is delivered to your door a fresh, new package called "today". God has designed each of us in such a way that we can handle only one package at a time...and all the grace we need will be supplied by Him as we live out that day!

"Those who know Your name will put their trust in You, for You, o Lord, have not forsaken those who seek You".
Psalm 9:10

In God's love,
Sarah Gina (Jessica's Mom)

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

11 comments:

Anonymous said...: The necklace turned out beautiful! I especially love the color :) Faithful In Prayer, Crytsal; November 23, 2009 at 9:26 AM
Nancy said...: Jessica's eyes are so beautiful! I remember them so well!

May God touch your eyes sweet Jessica and give you TODAY'S gift of clear vision and relief from pain!

Prayer warriors are all around the earth with a clear vision of what we ask for today. Blessings on the Stevens Family and thanks and love to all those that love them so much!!

What a wonderful testimonial you are creating Jessica. Baby steps as Dr. Cantu works his plan of action and God makes all miracles possible!
In loving prayer,
Nancy; November 23, 2009 at 11:30 AM
Anonymous said...: At Sunday Mass the priest asked for those that were in need of prayer. Of course I called out "Jessica" so again another entire churchful of parishoners prayed for you. I hope that these prayers gave you extra strength.
Saratoga Linda; November 23, 2009 at 12:42 PM
Anonymous said...: Hi! Melisa again =) I was hoping you could email me soon please!
ML77549@appstate.edu. Thank you!; November 23, 2009 at 12:59 PM
Unknown said...: Dear Jessica,

Your necklace has sold 26 pieces so far! You are loved and your strength is admired. A lady bought your necklace so her daughter could have strength going for her first IV treatment. You have inspired us to be better. Our young son, Tristen, knows your name and wears the ribbons. Of course he says Lego more than Jessica, but his heart is in the right place.
We are praying for you. God bless you for being brave!
Brian and Michelle Mah (and Tristen); November 23, 2009 at 8:20 PM
jennkurz said...: HI Jessica and Gina

The necklace is gorgeous and I can't wait to wear it. I will wear it in your honor and those afflicted with Lymes Disease and RSD.

My prayers continue to be for healing for your pain, healing in your legs, your headaches and relief from the static vision you continue to be plagued with.

Stay strong and know that God is with you and your family.

Jenn; November 23, 2009 at 8:28 PM
Anonymous said...: Dear Gina & Jessica -- The necklace is so very lovely! It is most certainly a "must have" not only because it is positively beautiful but because of all that it stands for! Thoughts and prayers are sent your way to get better each and every day. With our love . . . The Klatt Family; November 23, 2009 at 10:50 PM
Madelon said...: Good morning Jessica and Gina,
Another day dawns here on LI. It's cloudy now, but sunny skies are predicted for the afternoon. Just like the weather changes so can our lives. I pray for good changes in your lives...that Jessica may be free from pain and that she may see God's beautiful world through perfect vision once again. I pray for a day of miracles, even small ones. God's blessings on you both!
Madelon; November 24, 2009 at 7:24 AM
Anonymous said...: Hi Jessica and Gina, I have returned to the blog! I was having problems and error messages trying to get on, but I am back. The necklace is gorgeous! I can't wait to get it and wear it. I wrote a comment to the Mahs when I ordered it, since there was a place that you could write one. As I read it back to myself, I was thinking that I would like you to see it too, since it was written from the heart. So, I copied it (I hope the Mahs don't mind) and here it is:

Jessica Stevens is an extraordinary person. She is going through an extremely difficult trial with patience, grace, and deep faith. At her young age, she is an inspiration to all. Her mom, Gina, is a living example of the depths of a mother's love for her child. Gina is steadfast in her prayer life, her faith and hope for her beloved child, even while simultaneously immersed in the real-time extreme stress and challenge of living in a hospital environment, away from her family and friends. It is a testament to the way Gina lives her life that she has invented the "Ketamine Coma Bear" for other patients and doctors and constantly finds ways to make others more comfortable in difficult surroundings. She has always been this way, always finding the positive in every single situation. David, Jessica's dad and Gina's husband, is a man of deep faith and love and support for his beloved family. Katherine and Michelle, Jessica's younger sisters, have also dealt with this difficult time with patience, understanding, and support for their sister, who they love so much.

I am so happy that the necklace you created for Jessica is so beautiful, because these are truly beautiful people you are honoring here. I am humbled at the many sacrifices that they have all had to make over the past few years, and the radical pure faith that they live by every single day, minute by minute. The crystal will reflect the light in many different ways, just as Jessica and Gina reflect the light of faith and hope through their daily struggles, and share their experiences with us all through the blog. The bail is the ribbon, which binds people who are fighting against illness of all types and reminds them and us all that we are each stronger than we think. Finally, the necklace itself is a reminder- a way that all of us who are wearing it and walking in prayer along with Jess and Gina on their journey can be connected to them even though we are apart for now.

Thank you for giving me the space to say this.

Have a wonderful Thanksgiving, and cherish the time you can spend with your family and friends.

With appreciation and gratitude,

Angel D'Antonio

I love you guys. Hang in there!! Love always, Angel

p.s. I went over to the rectory at St. Joseph's Church and put Jessica's name on our prayer list. So now another whole congregation will be praying for Jessica!! xoxo; November 24, 2009 at 10:37 AM
Marianne said...: Dear Jessica and Gina,
The necklace is absolutely beautiful. As said earlier not only the beauty of it but for what is stands for. I will be so proud to wear it, in your honor and tell everyone I can about you. May God continue to bless you each day. Love, Marianne & Rob; November 24, 2009 at 7:52 PM
Anonymous said...: Hi guys, the necklace is BEAUTIFUL!!! I will b ordering it.Hope the two of you will have a peaceful Thanksgiving. Remember, we miss you and will b thinking of you fondly. " God gave you a gift of 86'400 seconds today, have you used one to say "thanks"? "Ithought this was an interesting quote. Luv ya, Bonnie; November 25, 2009 at 8:07 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.