Jessica's Journey: Exciting news!!!!! & Happy Easter!!!

Thursday, April 5, 2012

Exciting news!!!!! & Happy Easter!!!

Hola!

I am sorry for the lack of updates on here! I’ve been very busy! I seriously don’t know where the times goes.

I feel like my new life at home is running at around 90mph!! My life in Mexico ran at about 10mph (sometimes much slower) … I think I am probably comfortable at around 40…so it’s been a HUGE change and adjustment for me (and my mom), everyday, just getting used to the craziness and chaos of home life.

However, it is a wonderful chaos and I am blessed to be able to keep up with everyone and all of the excitement that I am experiencing over every new thing I get to do!!

Like going out for ice cream!! Going shopping for the first time in 6 years!!

Going to the beach!!Watching the sunset!!

Another successful fundraiser was held in my honor at the Marco Lutheran Church by our wonderful friends, Nancy and Joe! It was a lot of fun to get to see and thank some of the people who made my recovery possible in person!

As I re-adjust to American life, Mexico is still very much a part of me (after all, I am Mexican after the many blood transfusions I had there ;) In everything I do and every moment of joy I experience I always carry Dr. Cantu and my Mexican family in my heart… I am reminded of them everyday, in various ways!

I even made the local paper!!

“Miracle in Mexico?”… Yes. Absolutely!

The response to my FOX TV “Jessica’s Journey” interview has been overwhelming and incredible!

*Watch it here: http://www.wsvn.com/features/articles/specialreport/MI94660/jessica-s-journey/ *

I’ve gotten so many emails and messages from others who are suffering, or have a family member who is, from organizations and foundations wanting me to speak at conferences, and even from doctors who are treating this disease in various ways, asking about my experiences.

Definitely, the most exciting email I received was from the producers at Good Morning America, saying that they had watched my story and were interested in doing an interview on GMA!!

We later spoke by phone and were told that they thought the story was too big for GMA, and that there were several producers who wanted to pursue a larger 1 hour primetime ‘medical mystery’ special!!

….On national TV!!!

This is something I never could have imagined doing, but something that I am very excited about because I know what a terrific opportunity this is to raise awareness of RSD , while sharing my story of hope, faith and miracles.

This is SO much more than just “my” story…. Some of the strongest and most amazing people I have met through this journey are my fellow warriors who are suffering in tremendous pain… this is their story too!

My prayer to God before going to Mexico was that if I made it through this treatment and recovered, I would use my experience to help others….

God was so faithful to his end of that deal, and it is my turn to hold up to my end by being the voice for us all! If through these interviews, I can do that, it will be an honor and great privilege.

It is my mission now to first and foremost raise awareness of RSD and to bring awareness both publicly and in the medical community of the use of ketamine in its treatment.

I will let everyone know where this leads once I have more details!

Also, yesterday I filmed a TV interview with Patrick Nolan from FOX Channel 4 (Cape Coral/Ft.Myers/Naples), it will be airing in a few weeks! I will keep everyone updated and post a link to it once it airs!

As long as God continues to open the doors for me to tell my story, I will continue to tell it.

Above all, this is the story of a mighty God who heals, restores and saves! I think now, especially at Easter, it is so important to take time to remember the huge sacrifice that was made for us all. He loves us more than we can even imagine and He always has a plan, as hard as it is to see at the time.

This Easter is my first one spent at home, with my family, healthy and not in a hospital in SIX YEARS! I plan to celebrate the day by doing what I love most--- LIVING!

I hope that everyone has a wonderful and very blessed and happy Easter!! Thanks for checking in!

In God’s amazing love,

Jessica

PS- Molly wishes everyone a very Happy Easter too!

Jesus had no servants, yet they called him Master…

He had no degrees, yet they called him Teacher…

He had no medicine, yet they called him Healer…

He had no army, yet kings feared Him…

He won no military battles, yet conquered the world…

He committed no crime, yet they crucified him…

He was buried in a tomb, yet he LIVES today!!

HAPPY EASTER EVERYONE!

*To Post a Comment click on Comments below*

8 comments:

Rosemary and John said...: Dear Jessica,

What wonderful and exciting news and fabulous pictures!

Speaking about resurrections.

This Easter we celebrate Jesus coming back to all His people after He was crucified just as He promised He would do. We are so grateful to Him for our many blessings. Every day is a gift.

Also, this Easter we are so happy to literally have witnessed your resurrection back to life with your family. God has been so good to all of us in answering our prayers.

We wish you the happiest Easter ever and please do keep all of us "in the loop" with your interviews, etc. If anyone can get the attention of the medical minds and the general public, it is you and your Mom! We look forward to watching your progress on national T.V.!

All our love and continued prayers,

Rosemary and John
xoxo; April 6, 2012 at 7:05 PM
Fern said...: In time you will find your own pace. I am thrilled for you that you have the opportunity to share your story with the world!
Happy Easter!
Miss you all,
Fern; April 7, 2012 at 5:07 PM
Anonymous said...: This is fantastic Jessica! Jesus came to share a message of hope and his love. All the great servants did the same! You are a mighty servant of our loving Lord and we are so thankful for having the opportunity to know and love you!!

Happy Easter Jessi-Bunny!
(Isn't Jessi what Dr. Cantu would call you sometime?)

We are so excited for the Steven's Family!!!! Praises be to God!; April 7, 2012 at 6:16 PM
Autumn stevens said...: I have Full body RSD and live in Delaware ,I'm going to be having the first of my ketimine teeatments in the ICU for a five day treatment ,I don't have family who understand my life with RSD and I have a big issue with noise making my pain worse in which no one understands I have it on my face and have to cover my face outside and even inside if I can feel air from vents I'm living in hell and have no community or fame support I have had this for 12 years but diagnosed 6 years ago ,I went through so
Many doctors that thought I was crazy because I complained of the rain burning my arms I have not showered in over a year ,could Jessica or anyone in her family please contact me I'm going through more than I can handle and have two children I feel like I'm fighting for my life I am in my bed most days and my family isn't supportive they just say I'm not the only one with pain ,I can give u my phone number my email is color40vol@yahoo.com autumn Stevens ,I also am on Facebook ,RSDhelpdelaware it's a page that I tried to start but hasn't had much support ,I know u are going through your own struggles but I don't think there are many others who understand the hell I live in ,thank u !; April 9, 2012 at 12:34 PM
Marianne E. Quinn said...: Dear Jessica and Family,

I am so Blessed to have you in my life! I am so Happy to hear All the Good News especially about National TV and eating ice cream!! May God continue to work Miracles through You! It has been such an inspiration to read your story! May God Continue to Bless You and Your Whole Family!
Happy Easter! Happy Spring! Happy New Beginnings!
Love,
Marianne; April 9, 2012 at 12:48 PM
MJC *-* said...: Wow, I just stumbled upon a video on youtube about ketamine coma.

When I saw a news-video about you, I was so shocked and I wanted to know how the coma and everything went...So I've found your blog and I'm so happy for you to see that you look so good and you survived..that's amazing. I had to cry when you said "I feel like the luckiest girl in the world, the breeze on my skin, the sun on my face, all these little things in life that you take for granted...I don't anymore"

I had skin allergy from head to toe for 3 years. NOTHING compared to what you had to go trough, but I felt so so horrible and sick, I couldn't sleep, my whole body was hurting everyday and I can imagine for 'just a little bit' what kind of hell you left behind...

Enjoy all the things you can do again like shopping and stuff! :)

I will follow your blog ^-^
Greets from the Netherlands!; April 9, 2012 at 8:08 PM
Anonymous said...: Dear Jessica --

So wonderful to hear form you again. We loved the photos . . . can I say the picture of Molly will leave us smiling for days to come -- that is the cutest photo ever!

You look amazing, are amazing & are doing amazing things. You are an INSPIRATION to all and there is no doubt that both you and your story will continue to motivate, guide & inspire. You keep on that 40 m.p.h. path -- remember, slow & steady wins the race!

With love and best wishes to you and your whole TRULY TERRIFIC family!!

The Klatts; April 16, 2012 at 1:11 PM
Anonymous said...: Jessica, You look fantastic!! Keep up the hard work, I am so happy for you and your family. Reading my devotion today and saw this in Hebrews 11:8~ "By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going." Like Abraham, you had no idea where God was taking you in this journey, nor do you fully realize the eternal impact you will have because of the lives you are touching by your testimony. Just know, it is significant. Blessings, Alan
http://northland.cbmc.com; April 16, 2012 at 10:33 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.