Jessica's Journey: July 2010

Friday, July 23, 2010

After the Rain - A Rainbow ...

Hi To All,

To view Jessica on Fox TV, Click on Link Below:
htt p://www.youtube.com/watch?v=PW_vstm0bS8

To Order Jessica's Journey Necklace, Click On Link :
http://www.etsy.com/view_listing.php?listing_id=41687962

To view New Vemma Product Video, Click on Link Below:
www.WeDoItForTheKIDS.com
(Sales of Vemma Products also help Jessica's Journey-for more info contact Nancy @ (419)350-9058)

I can't believe that Jessica and I have been in the apartment one month already.

It has definitely been a big transition for her and I am still amazed at her strength, strong will and fierce determination to one day be the way she was years ago.

We are both still adjusting from "in-hospital life" to "out-of hospital life".

I am also still trying to figure out everyday life in Mexico. From the simple things of going shopping to the local H.E.B. (which is like a Stop n Shop or Publix) and then trying to navigate the local WalMart and Costco (Yes - they have these stores here in Monterrey - thank God!)

For Jessica - she is still trying to take those "small steps" towards her ultimate recovery. This past week was a bit rough in that we had problems with her hospital bed, as well as problems with her PCA and medtronics pump - all while Dr. Cantu was away. Dr. Cantu came back from his vacation with his family and not a moment too soon for us! Michelle is still here with us and it certainly feels a little more like "home" having her with us in the apartment.

The other day as I looked out of the window that overlooks the Sierra de La Silla mountain, I was awestruck with the beauty of a most magnificent rainbow. The kind of rainbow that extended from one side over to the other; but this rainbow stretched above the mountain - "framing" the mountain and all of its majesty!
When I think of a rainbow - for me it is a sign or promise from God. I came across this poem on the internet:

God's Rainbow

Rainbows appear after mighty storms,
When things look their very worst,
Just when the skies are darkest gray,
Look for the rainbow first.

The rainbow is a sign of God's promise,
That He will guide us through any storm,
That He will see us through all our troubles,
No matter what their form.

When you feel battered by life's storms,
And you are filled with doubt and dismay;
Just remember God's rainbow is coming -
It's only a prayer away.

In Christianity, after Noah's flood the Bible relates that the rainbow gained meaning as the sign of God's promise that terrestrial life would never again be destroyed by flood (Genesis 9:13–17):^[27]

"I do set my bow in the cloud, and it shall be for a token of a covenant between me and the earth. And it shall come to pass, when I bring a cloud over the earth, that the bow shall be seen in the cloud: And I will remember my covenant, which is between me and you and every living creature of all flesh; and the waters shall no more become a flood to destroy all flesh. And the bow shall be in the cloud; and I will look upon it, that I may remember the everlasting covenant between God and every living creature of all flesh that is upon the earth. And God said unto Noah, This is the token of the covenant, which I have established between me and all flesh that is upon the earth".

After Hurricane Alex and all of the mini-storms that Monterrey has had since then, it is so fitting that such a magnificent rainbow would appear in the sky and above the majestic mountain that is such a symbol for this city and for its people.

I also think that the rainbow is a promise from God that in whatever "Mighty storms" we may encounter in life, whether it be illness, death, or tragedy - we must remember that God is ALWAYS with us - through the storms (bad times) and also through the good times. It is His mighty love and His protecting hand that comforts us, protects us, envelops us, and hopefully heals us!

Thank you all for your continued prayers for Jessica and I as she continues to take her "small steps" each day and as I try to navigate life in Mexico. This has certainly been an amazing journey - filled with many ups and downs - many stormy and sunny days - many miracles - and yes --- so MANY stories to tell...

We pray that you ALL see that "rainbow" in the sky and realize the "promise" that it sends to all that look upon it and believe in a God that is so wonderful, so omnipresent, and so majestic!

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

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Thursday, July 15, 2010

56,000 Views of Blog! 15,000 Views of YouTube!

Hello to All,

To view Jessica on Fox TV, Click on Link Below:
htt p://www.youtube.com/watch?v=PW_vstm0bS8

The storms have finally ended and the beautiful Monterrey sun has reappeared over the Sierra de La Silla mountains once again!

Jessica has been reconnecting with her sister Michelle this past week. It is so nice to hear them together again talking like only sisters can! For all of us who have sisters and/or brothers, we know the special connection that exists - it is like no other!

Jessica has been responding to the antibiotics and the fevers have lessened. Dr. Dillman (aka Dr."Febricula") wants her to finish the course of the antibiotics. All cultures came back negative and so it is believed that it was a flare-up of her RSD - as a few of the lesions have reappeared on her right arm. For Jessica, the ketamine is a necessary component to keeping the lesions at bay and also the pain some what controlled.

Since being in the apartment, I have had time to reflect on the time that Jessica and I spent at the Hospital San Jose Tec. For the 10 months that we were there, so many things happened and so many stories need to be told. My plan is to write a book about this journey. In fact I have already begun to do so! The title will be "It's A Long Story....But....." and each chapter will begin with the "But.....". My hope is not only to tell Jessica's story, but to also raise awareness for RSD - a disease that is so misunderstood and so life-changing; and also for Lyme - a disease that people need to be so careful of due to its' devastating effects as well! I will keep you all posted on the progress I make with the book. Many of the blog postings will be a part of the book - as well as many of the comments. Who knows - maybe it will be a bestseller??? Only God knows the answer to that one!

The other day we had our first visit from a fellow coma patient - Blair. He has become very special to us - he is like family. He came by before his trip back home to Canada. He and his companion Susie brought over some special gifts for Jessica and I. Jessica received a hug-bear and I received a beautiful Beatles painting to hang on our wall in the apartment. Thanks Blair for the presents, but more importantly for the visit and for all your love!

Dr. Cantu returns from vacation this Saturday. It will be good to have him back and we hope he had a nice vacation with his family --- he deserves it!

Thank you all for the compassion that you have shown to Jessica and to our family. May God bless you all with good health --- for it is something that you cannot buy and so very important --- besides our faith in God. It is with God that we all find the strength to carry on.....

Psalm 84:11&12
"For the Lord God is a sun and a shield; the Lord bestows favor and honor; no good thing does he withhold from those whose walk is blameless. O Lord Almighty, blessed is the man who trusts in you."
Psalm 37:3-5
"Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in Him and He will do this for you."

Peace and love always,
Sarah Gina (Jessica's Mom)*

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Thursday, July 8, 2010

It's Raining INDOORS!!!

Dear Family & Friends,

To view Jessica on Fox TV, Click on Link Below:
htt p://www.youtube.com/watch?v=PW_vstm0bS8

This will be a quick post as I don't know how long my computer will work and stay connected.

Let me start by saying that this past week has had many ups and downs.

The city of Monterrey is trying to rebuild and regroup after a devastating hurricane - the likes of which have not ever been seen here. We received over 25 inches of rain in a 3 day period! Many people were without power and water for days. Many roads were damaged by the excessive weight of the water and many bridges have been deemed not safe for passage. All homes received some type of water damage, whether it was thru windows, under doors, or by dirt being drawn into their homes by the excessive rain.

Please read the following article about the Hurricane:
http://news.yahoo.com/s/nm/20100703/us_nm/us_storm_alex_monterrey

Jessica's Dad & sister Michelle arrived safely this past July 4th. Dad will be leaving this Saturday morning and Michelle will be staying for the month to finally be with me and Jessica. It is so good to have them here even though we have had a week of crazy occurences in the apartment due to the storm. We are still experiencing rains everyday and another tropical storm - Bonnie - is looming in the horizon.

Dr. Cantu has virtually been here everyday as Jessica is experiencing low grade fevers again. The plan is to do "house calls" with the infections disease doctor - Dr. Dillman (aka Dr. Febricula). He has run some bloodwork and cultures and he put Jessica on levoflaxin daily for 7 days in the meanwhile. Please pray that the fevers will resolve as her pain has increased due to the fevers/infection.

Dr. Cantu leaves on vacation this Sunday and Dr. Luis (Luigi) will be visiting Jessica in the apartment and doing her medications and such. Special congratulations go out to Dr. Luigi and His wife Emma on the birth of their first child - a daughter - named Regina. She was born on July 5th, the same day as her Mom Emma and also her grandfather --- Amazing. She is beautiful - a true "princesa".

I will try to blog a longer post in the next few days. It has been crazy here with the storms and the water and settling in. Imagine having problems in your home and having to get them rectified. Then imagine trying to do that all in spanish and in Mexico and then add a hurricane into the mix! God is good and he has provided the support we have needed thru friends that we now have here in Monterrey! Some days though are definitely easier than others.......

We hope you are all well. Thanks for all the continued prayers for Jessica and for our family. Please pray also for Blair and Fern who recently left the hospital after their boosters to return to their homes in Canada.

May God continue to keep us all safe, well and in good health!

In God's love and with his grace,
Sarah Gina (Mom to 3)*

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Thursday, July 1, 2010

200th BLOG POST!!! HURRICANE ALEX IS HERE!!!

Hello to Our Family, Friends, and Bloggers,

I can't believe that this post is my 200th Post! --- and it couldn't come at a better time. My 200th Post during Hurricane Alex!!!

We are in the apartment only 10 days and we have been battling a hurricane or "huella" as they say in Mexico.

It has been 20 years since the likes of a storm such that we are now experiencing as even touched Monterrey, this beautiful city, that before now was always protected by the Sierra Madre Mountains on one side and the Sierra de la Silla Mountains on the other.

There is a famous river - Santa Catarina - which only two days ago was completely dry, and has been dry for 20 years!!! The last storm to hit this area was 20 years ago - Hurricane Gilberto. This river is now overflowing!

As I sit here posting this blog I have been busy all day placing towels and pots by the windows as water is coming in from every angle. Even though we are in a new apartment building, these structures are not made to withstand these type of storms, nor this amount of rain - over 15 inches I think! It has been a hectic day to say the least!

Dr. Cantu just left our apartment. He came to visit Jessica and adjust some of her medications. He is like the "mailman" - neither sleet, nor snow, or even a hurricane can keep him from his appointed duties!

Jessica is still trying to adjust to the new surroundings and the new hospital bed. Just a few days ago we received a better type hospital bed for her. It is on loan from a fellow RSD sufferer named Olga. We met her before we left the hospital and we quickly became friends - there is definitely a very special connection! She and her husband and friend Blanca delivered the bed before the storm and we are so grateful to them for all of their help, love and support.

Please pray for the city of Monterrey - to be able to bounce back quickly after this tremendous storm.
Please pray for the wonderful people of Monterrey - many of whom we now call our "family".
Please pray for Dr. Cantu - that all his travels to and fro are safe.
Please pray for Jessica - for her to find that inner strength and determination that has so become a part of her daily struggle.
Please pray also for Elana, Fern, and Blair - fellow RSD coma patients who are currently in Mexico for their boosters.

Please pray also for a safe journey for Jessica's Dad and sister Michelle. They are due to arrive here late Sunday - July 4th - weather permitting!!!

In God's love, always,
Sarah Gina & Jessica*

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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.