Jessica's Journey: January 2011

Sunday, January 30, 2011

Upcoming Fundraiser in Garden City, NY

Hello To All,

UPCOMING FUNDRAISER FOR JESSICA'S JOURNEY:

Resurrection To Host Art And Memorabilia Auction

Lutheran Church of the Resurrection in Garden City, N.Y. will host an Art & Memorabilia Auction, Friday, Feb. 4, starting at 7 PM. The fund-raiser will assist with two important causes. Monies raised will go toward medical expenses for Jessica Stevens, a member of Resurrection who is battling severe complications from Reflex Sympathetic Dstrophy(RSD) & Lyme Disease. Funds will also support The Mission of Resurrection & The Life Church.

An Art Preview will begin at 7 p.m. when guests may view the art and memorabilia for auction, while enjoying an array of hors d’oeuvres and beverages from many local restaurants.

At 8 p.m., a professional auctioneer from Marlin Art will open bids on a vast selection of fine art and items from sports, music and entertainment. The event also includes a Door Prizes and a Silent Auction for gift baskets packed with exquisite prizes.

Rev. Jeff Browning, Pastor of Resurrection, said this is the second such fund-raiser Resurrection will host to benefit the Stevens family. “Jessica and the Stevens family are such special people. We are thrilled to be able to do whatever we can for them.”

The evening will conclude with coffee and desserts, featuring sweet delicacies made by many of the church’s finest bakers.

Resurrection & The Life Church is a Christian community of faith, with their main campus located at 420 Stewart Ave., near Clinton Rd., in Garden City. For more information, call 516.746.4426, or visit resgc.org or thelifeny.org.

We would like to take this opportunity to thank Pastor Browning and the entire congregational family at The Lutheran CHurch of the Resurrection for ALL of their continued efforts in fund-raising, their donations, and mostly ALL of their love, support, and prayers offered on behalf of Jessica and our family! We could not have taken this journey towards wellness without you ALL!!!

In God's Love,always,

Sarah Gina

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Saturday, January 15, 2011

HAPPY 23rd BIRTHDAY JESSICA!!!

Jessica & Dr. Green Shirt (aka Cantu)

Blessings To ALL,

Today is Jessica's 23rd Birthday and oh what a difference a year has made! Last year on this day, she was in the hospital going on 5 months, had a 104 fever and was fighting infections and many obstacles! This year, although we are still here in Monterrey, she is out of the hospital after being there for over a year, and her journey of hope seems that much brighter! Praise God!

" The appearance of a beautiful and magnificent Rainbow was God's promise of Hope to Noah and his family. It was a sign of peace, comfort and joy."
"The Rainbow is a sign of God's promise that He will guide us thru any storm, that He will ease all our troubles, no matter what their form!"

My Dearest Daughter Jessica,

This journey that you and I began together, has been one incredible journey -- many highs, many lows; many obstacles, many miracles. But, through it all, you have never given up Hope. It was and is that hope you had and continue to have in God, in your doctors, in prayers, in miracles, and in yourself, that has been the focus of your journey to having a life again. Jessica - never let go of hope. One day you will see that it All has come together and what you wished and prayed for has finally come to be! You will look back one day at what has passed and you will ask yourself "How did I ever get through All of that?"

Jessica, my hopes for your birthday are:

That you wake up in the morning with a big smile on your face...
That the sun is shining just for you... and the birds are singing their very best songs...
That your day is filled with lovely surprises, and that family & friends call or write you just to say "Hi"...
That everything goes your way...and everything is well with your world...

I hope that you enjoy all that you can do... and that you can laugh and talk to your heart's content...
That you have all that you wish for yourself and those dear to you, and that ALL your dreams come true...

And, at the end of this day, I wish you a perfect moon above the Monterrey mountains, shining just for you...
and a snug and cozy bed with the softest of pillows, so that you can sleep like a baby with a smile on your face...

I hope you have a perfect end to a perfect day... and I hope that every day is just as wonderful in its own way...

So, Jessica, think of Mommy's Hopes for you, and let them turn on the sunshine inside of You! That's my Birthday Hope for You!!!

I Love you Jessica and always will...
You have my heart forever...
Happy 23rd Birthday!!!

Love,
Mommy
xoxoxo

*****************************************************
MESSAGES FROM HOME:

Dear Jessica,

The fact that you are turning 23 is wonderful. The fact that you're turning 23 in Mexico is cool and the fact that you're turning 23 and feeling good is just amazing and a miracle!

You are definitely the strongest person in faith, resolve and courage that I know.

I hope you have a special day on your Special Day.

When I saw you recently, I saw for the first time in over four years the daughter I used to know. I saw my oldest daughter who is funny, witty and beautiful.

And, I know that you will eventually WALK out of Mexico.

So have a Happy Birthday.

May God, continue to bless you, keep you and strengthen you.

Love,

Daddy

********************************************************

Dear Jessica,

Today is your 23^rd birthday, YAY!!! When I think of birthdays the first thing that comes to my mind is the cake, the parties, the presents and most importantly the wish that the person makes when they blow out the candles. I know that your last couples of birthdays haven’t been fun for you; I think they were mostly reminders that you were still sick. This birthday, however, is so much different!! I’m sooo happy that you will finally have a birthday that you can really enjoy! You’re doing so amazingly great and I am beyond proud of you! I thank God everyday for these wonderful blessings that have happened to you this year.

Your last healthy birthday was when you turned 18 years old. The whole family went to a nice restaurant together and then afterwards you went downtown with your friends. We never knew that birthday would be your last happy one for a few years, but we also never knew that your 23^rd birthday would be one of the best that you have had in a long time!! You amaze me more and more everyday and there is absolutely no doubt in my mind that you’ll be even better by your 24^th!!

Most people’s role models are their parents or maybe some famous old person, but my role model is a young, beautiful, intelligent 23 year old...Can you guess who that is?..YOU! You have taught me so many life lessons that you didn’t even know you were teaching me and I am so grateful to have you as my older sister!

So, as I was saying before, people make wishes on their birthdays and when I think about it most wishes really don’t come true. But on rare occasions, when the time is right, and maybe if the wish is not just a wish but somewhat more of a hope or a prayer that wish may just come true. I know this. I know this because every wish that I’ve made for my last 5 birthdays were all the same thing: “Please bless Jessica to be healthy, please bless this to be the year.” My wish finally came true and I couldn’t be happier! I love you with all of my heart and I will never stop loving you no matter what.

Happy Birthday!
Love, your sister Katherine

*********************************************************

Dear Jessica,

HAPPY 23^rd BIRTHDAY! I cannot believe how far you have come in one year! Your 22^nd birthday was only last year. Last year was a year of troubles and recovery! To think that only one year ago, only 365 days, you were in the hospital, that we thought that would be the only room you would see, room 845.

Now, the new year has brought a whole new time filled with happiness and joy. Birthdays are entertaining and filled with laughs, birthday cake and balloons. And after someone’s birthday what do they think of? How fast it went. Some of the fun of a birthday is the anticipation, well this birthday couldn’t have come sooner.

For my whole life, I have called you my wessie. You have been like a second mom and role model to me. I used to always think, “This will be the year, this will be the day”. Finally that day, and that year has come. Ever since I started to talk you’ve been my wessie, because as you know, I couldn’t say Jessica or “Jessie” so I called you “Wessie”. This birthday will be the best one in five years and I am so proud of you! I hope this birthday is the best one! Happy 23^rd! Love you my wessie!

Love, your mini-wessie,
Michelle

*****

HAPPY 23RD BIRTHDAY JESSICA - WE LOVE YOU & ADMIRE YOU!!!
P.S. MOLLY -your beloved dog- says "Woof-Woof" to You Too!!!

*****

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Friday, January 14, 2011

Tomorrow is Jessica's Birthday!

Hello to All our Family, Friends, and Bloggers,

Tomorrow - January 15th - is Jessica's 23rd birthday!

I will be posting special letters to her in honor of her day!

When I think of what a difference a year has made........She truly is a very courageous young woman. I am honored to have her as my daughter!

Look for the special posting to the blog tomorrow and feel free to send her your well wishes also. We look forward to all of your comments!

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

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Monday, January 10, 2011

HAPPY BIRTHDAY MOM!!!

"To the world you may be one person...but to one person, you may be the world."

Dear Mommy,

HAPPY BIRTHDAY!!!

Having you as my mother has definitely been the greatest gift and biggest advantage God could have ever given me. I don't think that there are many other mothers out there who could have endured what you have with me during this past year alone-- especially with such amazing grace, incredible strength and unshakable faith!

Unconditional and absolute love is the greatest gift a parent can give to their child and you have given yours to me in abundance! You have been the purest example of Christ's unconditional love for me and it has been this love and devotion that has enabled me to fight through these past years of illness. I am certain that without you by my side I never could or would have made it through!

I really don't know how I can ever tell you in words just how much I love you and appreciate everything that you have done and continue to do for me, every day. But, today, on your special day, I just wanted to say thank you...

Thank you for putting your own life on hold for the past 5 years to take care of me. No mother should ever have to see her child suffer in the ways that you have had to, I know how hard this has been for you too, yet, you continually put my needs before your own.

Thank you for researching and learning everything that you could about Lyme disease and RSD, for locating and bringing me to see the best doctors and for being my biggest advocate through it all.

Thank you for being there to hold my hand through so many painful tests and procedures, for comforting me afterward, for being so strong for me, always.

Thank you for not allowing me to give up, even when at times I felt like I couldn't do it anymore. For always having hope, even when I had none left.

Thank you for being there for me, when others didn't know what to do with me, or for me. For loving me through all of this, even when I felt unlovable.

Thank you for always making me laugh, for continuing to be your crazy, funny self, even through the hardest times.

Thank you for everything you have done for me, for everything you have said, and for all of the times you said nothing and just listened to me.

Thank you for being my hero, my inspiration, my biggest cheerleader, my best friend, my nurse and my doctor.

Thank you... for everything! There are sooo many more things... small things and big things...

Mom, I love you so much and I know I don't tell you nearly enough just how much I appreciate your love, support, friendship & patience... but... just so you know... I think that you are the perfect, most amazing mother and I thank God, every day, for giving me the honor of being your daughter. I don't know what I would do without you!

You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me
Lifted me up when I couldn't reach
You gave me strength 'cause you believed
I'm everything I am because you loved me...

HAPPY BIRTHDAY MOM! I LOVE YOU!

Love always,
Jessica

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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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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.