Jessica's Journey: Happy New Year & Happy Birthdays!!

Saturday, January 8, 2011

Happy New Year & Happy Birthdays!!

New Year Blessings to All,

Today is January 8th, 2011 and in 2 days it will be my birthday and then on the 15th it will be Jessica's 23rd birthday!

When I think about how last year began here in Mexico and how this year is unfolding, I am simply amazed at what a big difference a year can make!

Last year the one word that became a major focus for this journey that Jessica has been taking towards having a life again without constant pain and sickness was "HOPE". I remember one of my postings last year about the word "hope". I said then that, for me, hope is defined as the following:

H aving
O nly
P ositive
E xpectations

This past year, Jessica's journey has been about hope and about trying to remain positive, even when all around you is so negative. Quite honestly, it is sometimes a very hard thing to do!

Before arriving to Monterrey with Jessica, our "hope" was to give Jessica a fighting chance at a better life. We knew that the chances were great that we could lose Jessica in Mexico due to the severity of her case. I remembered being asked first by Dr. Kirkpatrick in Tampa and then by Dr. Cantu in Monterrey, if I, as her Mom, was prepared for that in the event that it happened? As you can imagine it is the type of question no mother wants to think about, let alone even answer!!! But, I remember vividly my answer. I said the same response to Dr. K in Tampa, as I then said later to Dr. Cantu in Monterrey. My response was: "I came here with the full knowledge that this could happen! My "hope" is that God will answer my prayers for Jessica, but, quite honestly, if that is not His plan, then, Yes, I am prepared for that, because she doesn't have a life anyway!!!

Even writing that now brings with it a lot of different emotions. But, I am saying this to you today, that, in life, we have to remain "hopeful"! We have to try to think positively, because by doing so, we all can ultimately have the "miracle"we "hope" for! It is all possible with God, his grace, his love, and in His timing!

So...Peace, Love, and most of all Hope, for the New Year!

With hope and in God's love,
Sarita ( my name in Spanish)

" May your unfailing love rest upon us, O LORD, even as we put our hope in you."
Psalm 33:22

"But now, Lord, what do I look for? My hope is in you."
Psalm 39:7

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7 comments:

Fern said...: OK, now I wipe the tears from my eyes and respond. I remember that conversation with the doctors well. Many of them! I remember the eyes of my husband, resolute, strong, and HOPEFUL! Yoou are so right..... no one can comprehend the emotions that come with that position either. God has shown us all so much in this walk with you and with ourselves. We are all learning that the master's plan are not always what we would want, desire, think of, but they are always PERFECT

I thank God for his healing in Jessica and pray that it continues I also pray for continued strength for you all as the days and weeks and months march on. I praise Him with joy in my heart that my friends who are suffering are finding solace in His arms and that is the safest and best place to be!
Thanks again for the reminder. A good kick for me to get out of this slump and continue the journey!

Love you; January 8, 2011 at 1:32 PM
Anonymous said...: It has been truly amazing to watch Jessica's Journey through this past year (along with Mom at her side). I don't know of a situation that could have been more difficult.

But what a beacon of hope you and your family have been. Your hope and unshakable faith in our mighty God and ALL that He can do have been such an wonderful example of how we should be. God is not limited by what we think is possible. We have so many examples of this in the Bible but yet, He is kind enough to give us an example in your lives NOW so we can remember and know He is unchanging: always merciful, kind, compassionate and loving.

Your hope has been well placed and a wonderful reminder to us all to place our trust there.

We hope and pray that this will be the year that you will both be reunited with your loving family (and many friends) waiting for you back in the States.

All those little steps, Jessica, will take you back. Keep going, you will make it!

May God continue to bless you and your family, the doctors, nurses, your family in Mexico, and all those who have who have played a part in His wonderful plan for you.

With love & prayers,
The Turners; January 8, 2011 at 7:08 PM
Anonymous said...: My dear sweet Sarita,
In five minutes, you will be turning 29 (or something like that!!!). I wish so much that I could be back there with you in Monterrey - maybe having a margarita or two to celebrate this incredible day. The world was truly blessed the day you were born. Through you, I have learned that we never have to run out of patience, love, or hope. You have shown me (and so many others) that it is possible to survive and endure, even when the challenges are unbearable. Thank you for all that you are. I wish you every ounce of Gods blessings on this special birthday of yours. Love and hugs.
Nita; January 9, 2011 at 12:00 AM
Rosemary and John said...: Dear "Sarita" & Jessica,

Having read the three entries above there is little for us to add as they summed our thoughts and feeling up very well. Thank you for being in our lives and thank you for keeping the flame of hope burning!

Your birthday tomorrow should be a national holiday!

Love,

Rosemary and John; January 9, 2011 at 5:20 PM
Anonymous said...: I'm with Rosemany! How can you verbalize the heart felt gratitude to God and Sarita for the answers to the HOPE prayers we all offer up.

Happy Birthday sweet Sarita!!
You are all that Jessica has said as well as the Messenger for all of us, directed by God, to NEVER GIVE UP!!

Here's a BIG HUG and can't wait to see you all in person again.

Carol and I will have a toast to you and Ray on your shared birthdays!!!
Love Nancy and Joe; January 10, 2011 at 8:17 AM
Anonymous said...: Dearest Lymie Family,
Our story is the same, just different hospitals, wheelchairs, beds, doctors and meds. We have been on our Jenna's Jesus Journey for four years. Jenna is 19 and we are doing an in home herbal coma like treatment. We are hoping for the reset also. As a mother of a lymie my heart and prayers go out to you for unless you are in it, no one really "gets it". Our journey is the same, trusting God's will for our daughters. In His Grip, Lisa; January 12, 2011 at 1:40 PM
Anonymous said...: Jessica your are an amazing imspiration to all who have followed your journey and although hard for your it is so awesome to see how far you've come my the Grace of God, your strength, courage and faith and of course...you mom! Now may this year of 2011 be your year in every way....we still pray for your total recovery and return home!!!
We also want to wish you on this Saturday....a Wonderful "Mexican" Birthday....may you be blessed and enjoy a wonderful day with your mom and others...Enjoy and God Bless you always!!!
Love
Angela & all the boys xoxoxoo; January 13, 2011 at 1:45 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.