Wednesday, October 27, 2010

A message from Jessica!

The view from here- Cerro de la Silla mountain

"For the Lord is the great God, the great King above all Gods. In His hands are the depths of the earth, and the mountain peaks belong to Him!" ~Psalm 95:3-4

Hello everyone!

It’s me, Jessica! I thought it was about time that I wrote a blog post of my own to update everyone on the (amazing) progress I have made! Actually, the truth is, I have tried many times to write something, but I just couldn’t. It has been such a complicated journey- filled with so many ups and downs and so many emotions It really is nearly impossible to put this experience into words...

All I can really say is that I have been truly blessed with the greatest parents, loving sisters, an incredible support system, amazing family and friends and the most caring and devoted doctors in the world, all of whom have gone above and beyond to help me get to where I am today.

It’s mind-boggling for me to sit here now, out of the hospital- looking at the beautiful view of the "Cerro de la Silla" mountain and to think back on what I have been through over the past year. It has been a rough journey, but my improvement has been nothing short of miraculous. Even my worst day now is far better than my best day was 1 year ago. The Ketamine Coma Study was my very last hope. I am forever grateful to my New York doctors- Drs. Liegner and Finkelstein, for working tirelessly on my behalf to get me here for this treatment and to Dr. Kirkpatrick, for the opportunity to take part in this study, which for me, has been life-saving!

I cannot say enough great things about the care I have received here in Mexico. I can honestly say that coming here has been the biggest blessing in my life thus far. My doctors, especially Dr. Cantu 'Green Shirt", Dr. "Luigi" Barrientos, Dr. "Febricula" Dillmann, Dr. Cinthia "Lyme", Dr. Ramos "Medusa" and Dr. "Rainbow" Zavala, have all gone above and beyond what any doctor could ever be expected to for a patient. It is because of their love, dedication and patience that I am still here. I shudder to think of where I would be right now if I had not been given the chance to come here for this study.

I have a chance to have a life again and I am just so excited! Everyday and everything is like brand new to me and I can’t wait to re-discover all of the things I have missed out on for so long!

The most important thing I have learned throughout my journey is that God can take any situation, no matter how hopeless or terrible it seems at the time, and redeem it for His glory! It is hard to appreciate this when you are being tested, severely, and things go horribly wrong- it’s hard to imagine that any good can come out of a bad situation. But God will never let you fall farther than He can catch you- His power works best when we are at our weakest. When we are literally drained, being hit from all angles and the situation is (or at least appears to be) completely hopeless. It is these times that set up the stage for miracles to happen!

I know this and I believe this. I have lived it.

I know that I still have a long road ahead of me. Everyday has its own struggles and some days are a lot easier than others, but no matter what challenges may still lay ahead, each day I will continue to take the “small steps” (as Dr. Cantu always reminds me) needed for my full recovery, as I allow my body and mind to heal. I know that with my incredible Mom by my side, I can make it through anything. After all, it has been her unwavering love and support that has enabled me to keep on going this far. I don't know what I would do without her! I am beyond blessed to be her daughter.

Please know that I appreciate all of the love, support and most importantly, prayers that have been lifted up for me and my family! They have been answered, and I continue to be amazed by my God and His work in my life! It has been an amazing journey and I cannot wait to see where His plans lead me next! Everyday and everything is somehow serving His greater purpose for my life, and for yours too! You are all in my prayers daily and I thank you all from the bottom of my heart!

In God's Amazing Love,

Jessica (Sarah Gina's daughter :)

They say a picture is worth a thousand words…

What a difference a year can make!

Me & Dr. Cantu aka "Dr. Green Shirt"

August, 2009

September, 2010

I don’t think Dr. Cantu can ever fully comprehend just how special he is to me and the other RSD/Ketamine Coma patients. He is a beacon of light and a north star for all of us dealing with this horrible painful disease. He has restored hope to so many.

God is working miracles through you, Dr. Cantu, always remember that!
Thank you for caring, understanding and for always listening. Thank you for being willing to "step out of the box" and try whatever it takes to get me well. I love you, very much!

And also special thanks to Dr. "Luigi" Barrientos, who has been a God-send in my life and has helped me numerous times while at Hospital San Jose Tec. He is also one of my guardian angels here in Monterrey! Muchias gracias para todos!

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Monday, October 11, 2010

Jessica Is Out of the Hospital!!!

Hi To All,

I am happy to say that Jessica and I have left the Hospital San Jose Tec once again!

We arrived safely to the apartment at 7 PM Saturday. We are both trying to adjust to life outside of the hospital once again.

I have an interesting story to tell everyone about our "exit" from the hospital:

The plan was for the ambulance to arrive at 4 PM to pick up Jessica from our room #845 at the hospital. Dr. Cantu called the ambulance company and gave them strict orders on how to handle an RSD patient, as well as instructions on going slow over the bumps and to travel very carefully and slowly with Jessica. So, the ambulance arrives late at 4:30 PM - but this is Mexico and after being here for a year you come to realize that everything goes slower here anyway.

We then all carefully place Jessica on the stretcher and proceed to say goodbye to all the nurses as they wheel her towards the elevator. We then proceed down through the ER and into the waiting ambulance and I notice that it is very hot in the ambulance! I ask them to please put on the A/C (or "climas" in spanish). They then tell me that there is no A/C today-problems with this particular ambulance. So, it is decided that we will exit this ambulance and wait for another ambulance with A/C to arrive. But, because that will be at least another 30 minutes or so, we could not stay down in the ER area(due to infection risk for Jessica) and so we had to go all the way back up to the 8th floor and back into her old room once again!

You can imagine the nurses faces when they saw Jessica coming back up to floor! When I called Dr. Cantu and jokingly told him that we had left the hospital and returned and were back in our old room, I think that everybody could hear his: WHAT????????????? coming out of the phone!

But, here comes the interesting part of the story:.

The new ambulance arrives and Jessica and I are loaded into the back and we proceed to take the trip - slowly - and carefully - back to the apartment. Jessica is laying on the stretcher and looking out of the back doors of the ambulance and seeing parts of Monterrey that she has never seen before. We proceed thru a small tunnel and as we take the main road to the apartment she notices a truck is following directly behind us and it has big writing splashed across the windshield! As she starts to read it out loud, this is what it had to say: "CHRISTO TE AMA".

This truck with this saying, which translated means: "Christ Loves You" followed us all the way to our apartment! God does work in mysterious ways - doesn't he???......................

Here is a picture of the truck that I took because I just didn't think that anyone would believe such an amazing story!

The next blog will be a special one from Jessica to everyone. I just wanted to tell you this story and to let everyone know that Jessica is out of the hospital after another stay and she is doing very well --- Praise God!

In God's Love, always
Sarah Gina (Jessica's Mom)***
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Friday, October 8, 2010

Exit Plan is for Tomorrow.....

Hi Everyone,

To view Jessica on Fox TV, Click on Link Below:

Just wanted to let everyone know that we are still in the hospital.

The plan is to hopefully leave tomorrow.

It has been an incredible few months back here in the hospital.

What I have come to realize is something that I have said from the beginning of this journey - and that is that in ALL things God does work for the good of those who love him. At times when you are going through the trials of your life, it is hard to imagine anything good coming from them. I have seen so many things happen here at the hospital. Some of them good, some of them bad, and some of them miraculous!!! In all these times and in all of these occurrences, God has made so much good come from what seemed so bad. What we have learned is that in the end, God turned around the most unbelievable circumstances imaginable and turned them around for good and for His glory!!!

When Jessica and I are settled in once again in the apartment, we will update everyone and Jessica has a special blog post that she wants to send to all.

We have so much to be thankful to God for.

We love you all and pray for everyone each and every day.

Remember to always have faith in God. Remember to always have hope in a better tomorrow. And, remember, above all, that God ultimately has a PLAN for us all. We just have to wait patiently for his timing...............which is always perfect.

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

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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!