Thursday, September 3, 2009

The journey begins.......

Hi to all,

We have completed our first day out of ICU. We are on the 8th floor and it overlooks the beautiful Sierra Madre mountains and the city of Monterrey, Mexico. These days seem to be the most difficult for Jessica, even though you might think that the days in the coma would be more difficult than these! When patients come out of the coma they experience many different side effects and each case is different than the last. Jessica is the 23rd person to undergo the ketamine coma study in Mexico and only one of the @105 people that have undertaken this treatment so far, between Mexico and Germany, and there are many more waiting!

We ask that you continue to keep her in your prayers and ask God to make this next step of her journey quicker than the past 3 1/2 years have been. As you know, God's timing is perfect and I believe that this treatment will create a new "work" in Jessica, but as a Mom, if God could speed it up a little bit, I would be the most grateful, happiest, Mom in the world!!!

With love, always,
Jessica's Mom

A Message from Nancy who is with us in Mexico

Hello to all our prayer friends in the World! We thank you for keeping Jessica foremost in your hearts! Each of us is learning as we are going through this journey together. Jessica's strength and will to figure this out is amazing.She asks the most thought provoking questions. We sometimes wonder how she comes up with them. I am so confidant that each step will get her closer to the destination of pain free. My heart is heavy watching but God is giving us all strength to believe as this huge miracle unfolds. The tireless love that Sarah Gina shows is the strongest I've ever seen! These two make a great team!

Without too many details, the journey is very much like described in the videos on the blog, with some pretty upsetting, and Jessica says thank you for knowing what she is enduring... and keeping the prayers coming.

Even through these moments above, there's such a blessing and ray of hope for us as Jessica comes out with such a quick wit, one that Sarah Gina says she is so famous for.. For instance...Sarah Gina helps her through some of those tough times by saying "When scary thoughts or feeling come, say, Get out of here in the name of Jesus". So Jessica does. Then as we sit quietly Jessica comes out with a statement that makes us laugh almost to tears. For instance: Jessica is adamant that she does not want this shot that comes each night. I don't blame her one bit. Then Jessica said, " Get out of here, in the name of Jesus, is what I'm going to tell the nurse when she comes in with that shot!" What a brilliant and wonderful daughter she is. I'll bet she'll be a doctor someday!

As Nita said..."God is working miracles in Mexico"! Thanks be to God.
Love and with gratitude,

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


Jodi said...

Dear Gina,Jessica, & My New Friend Nancy,

Just want you to know there are people praying for you. I'm praying EXTRA hard for Jessica to be pain free soon, & for Gina too as your journey has been rough to say the least.
May God Bless you all each & every day!!! Jodi Lepp, Naples,Fl.

Anonymous said...

Hey Jessica, we are waiting for you to come home and tell us some jokes.You go girl!!!!!!!! kEEP UP THE GOOD WORK! LOVE, BONNIE

Angel said...

Dear Jessica, Gina, and Nancy, God has put the three of you together down there in Mexico at this point in the journery for a reason. I think that you have to be quite a special team to find humor in the middle of these difficult times! What a beautiful gift- laughter is so healing. We are thrilled that the lesions are getting better! We're constantly keeping Jessica in our prayers and always checking the blog. We love all of you very much and are sending positive thoughts down your way! Love always, Angel

Anonymous said...

Prauers from Saratoga.

Anonymous said...

Praise be to God! Our prayers are with you Jessica on your journey back to health. Joe S.

Anonymous said...

Dear Jessica & Gina
I'm very happy the Nancy is there we you and each day will be better very good tean remember God is always behind you! and we will continue Our
Love: Jimmy & Cecilia

Anonymous said...

You guys are an awesome team...God is in control..stay strong in His care. God Bless you!
Angela & family

Anonymous said...

Praying for You.......Crystal Ulmer

Cat said...

Dear Jessica,

I didn't know about this blog or I would have written sooner.

I am so proud of you -- you've been so strong. I am not in the least bit surprised that you woke up cursing; I laughed through my tears when I read it.

I have been praying for you, and I started weeping with joy when I read that your lesions were gone, that you spoke, and moved your legs... both of them!

You have never ceased to amaze and inspire me. You are full of God's Grace; your heart shines more brightly than any necklace from T&Co. ever could.

You saved my life when you brought Dr. Liegner into it. Your guidance has given me the faith and hope I needed to fight these diseases, and I know I'm only one of many people with chronic neuro-Lyme who owe their health to you. Thank you from the bottom of my heart.

You are still in my prayers, as ever. Keep fighting!

Let me know when we can start planning our shopping expedition in the Big Apple!

All my love,

PS: I'm counting on your mom to read this to you, and...
*I'm praying for you too, Mrs. Stevens, and the rest of your family as well... I know you and I have never spoken but Jessica has told me many times how amazing you are and how much she loves you. Take care and God bless you all.*

Anonymous said...

Dear Jessica & Gina

We were so happy to hear that you are now on the 8th floor and that you haven't lost your sense of humor and determination. We are deeply moved by your journey towards a healthy and pain free life ahead. We will continue to pray for you, your Mom and your family. May God bless all of you.

Love Paula, Ray, Kevin and Ashley

Anonymous said...

Hey, Jess. It's your RSD buddy Emily Wilford who came through the coma just after you. I stopped by your room yesterday to visit.
Keep the faith, Jessica. God has a plan for those of us with RSD. He is with you. You are never alone-even when times are filled with burning, intense pain.
You will be in my family prayers for a speedy recovery.
I'll visit again soon and try to hear that beautiful laugh!

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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!