Jessica's Journey: A Wonderful Christmas!

Sunday, December 26, 2010

A Wonderful Christmas!

Michelle and me on Christmas Morning

Good Morning!

I hope that everyone had a wonderful Christmas celebration yesterday! For me and my family, it was definitely the best Christmas we have had in many years!

There are hundreds of reasons that Christmas has always been my favorite holiday.

When I think back on my childhood Christmases I remember Christmas Eve dinner at my Grandma’s house and eating the most delicious Italian food, I remember driving around- looking at the beautiful Christmas lights, I remember arriving home late and being allowed to open “just 1” Christmas present- which undoubtedly, was always matching Christmas PJ’s for my sisters and I! I remember leaving out homemade Christmas cookies for Santa, and some carrots for his reindeer- (and being sooo excited to find them eaten the next morning!), I remember lying awake in bed with pure excitement and anticipation for Santa to come, hoping he would bring me everything I had asked for. But most of all I remember the great lengths my parents went through to make sure my sisters and I always had the best Christmas possible, filled with lots of special memories.

I don’t think that many people can understand what the holidays are like for someone who is ill, especially a long-term illness that involves tremendous amounts of pain. During the past years of my illness, Christmastime was always very difficult for me and my family. From smelling the delicious food that I could not eat, to the lights and sounds I could not tolerate, to being in too much pain and feeling too ill to even open my gifts on Christmas morning with my family... It was very hard to find the “Christmas spirit” while dealing with the reality of the situation, but I think I can speak for my entire family when I say that this year, the Christmas spirit was alive and well in Mexico!

This year I really felt like I was a little kid again, experiencing the magic of Christmas for the very first time! From the food, to the lights, the decorations and the music… It has been been so amazing just getting the chance to enjoy Christmas day with my family once again! The best part, for me, was seeing the looks on my Dad and sister Michelle’s faces when they walked in and saw me sitting up in my recliner chair waiting for them! They were both shocked and amazed to see the progress I have made since I last saw them over the summer!

This Christmas I am incredibly thankful to be alive, to be re-gaining my health, to have an amazing family who loves me, and to know that I am never alone- in anything. I am thankful for the opportunity to see and experience the holiday for it’s true meaning, through a completely different perspective than ever before!

I am most especially thankful to Dr. Cantu! Without him my family and I would not be here enjoying this day together.

I am thankful for answered prayers… for everything!

We thank God and praise Him for carrying us to where we are today!!

Happy Birthday Jesus!

Merry Christmas & Feliz Navidad to all!

In God’s Love,

Jessica (& the Stevens family)

***To Post A Comment, CLICK on Comments Below***

12 comments:

Anonymous said...: What a joy to see you sitting in your recliner chair! I bet your Dad and Michelle had the biggest smiles on their faces and such tremendous joy in their hearts when they saw you sitting there! God has answered our prayers.

May you and your family enjoy sweet time together and may God continue to richly bless the Stevens family. May you enjoy many, many more Christmas together in health, happiness and great love!

BTW, great job making the gingerbread house (so much fun to make & eat).

With love & prayers,
The Turners; December 26, 2010 at 11:12 AM
Michelle said...: Dear Jessica,
Yesterday I had the best Christmas with you and mommy. You have gotten extremely better since i saw you last christmas and over the summer. It wasnt the best christmas because I got alot of present, or because I'm in Mexico, it's because you are better and that tops all of my christmas gifts. You are my Christmas gift this year! I love you Jessica, you are so strong!
I LOVE YOU WESSIE!
Love,
Michelle; December 26, 2010 at 12:00 PM
Fern said...: I am so thrilled to read that you were able to enjoy Christmas Day and all that it entails! The sights and sounds can be so overwhelming to those of us who are ill. You have come so far in the last year! God is moving mountains!! This is a day you can treasure forever.... so special!

We had a good Christmas too. Everyone was home and Theo's parents joined us for dinner. There was laughter, and love abounding. Maybe just a few tears. Wolf celebrated his 16th birthday with us yesterday so we had a birthday cake to Jesus and Wolf!

So wonderful seeing you sitting up so much! I look forward to skying with you soon.

Enjoy these days with all of you together. May you continue to grow stronger each day!

God bless you; December 26, 2010 at 12:02 PM
not a minx, a moron, or a parasite said...: MERRY CHRISTMAS! Wishing you all the best! You look beautiful in the picture!; December 26, 2010 at 2:54 PM
Anonymous said...: Merry Christmas!
hope you got my card
you all look and sound wonderful.
love from Saratoga
Linda and Roger; December 26, 2010 at 5:43 PM
Anonymous said...: So happy for you and your family...glad I got to sypke with all of you on Christmas :) Looking forward to a reunion when you are back in the states!Adrienne; December 26, 2010 at 8:28 PM
Nancy said...: This is the BEST Christmas ever!
Jessica you were on the top of our WISH LIST.
When your prayers year round are for healing and pain relief for a loved one and then you see the MIRACLE unfold it doesn't get much better than that!

What a wonderful picture thank you for sharing your journey with us. We await the day when we will share a meal at your Gramma's house! Love Italian food too.
Kisses to Michelle and Sarah Gina and David, and Katherine in FL.
Xoxo
Nancy and Joe; December 27, 2010 at 7:26 AM
Lenny said...: They say a picture is worth a 1000 words... well the picture of Jessica smiling with Michelle says it all.

I am SO SO SO thrilled at the amazing progress Jessica is making...

Best wishes and HAPPY NEW YEAR!

Lenny Rivera; December 28, 2010 at 7:00 PM
Ashley said...: Merry Christmas!!! You look amazing! I'm so glad to see you and Michelle having a great time. Miss you so much and I'm so proud of you :) Best wishes and prayers in the New Year!!!

XOXOXOXO
Ashley; December 30, 2010 at 12:29 PM
Anonymous said...: This Christmas, I got the best gift ever; When I opened up the Apartment door in Mexico there was Jessica, sitting up in her recliner with a big sign that said Merry Christmas Daddy!

As 2010 ebbs away, there are so many things and people to be thankful for this past year.

I want to thank my wonderful wife Gina (Sarah to the rest of you), who though I miss her terribly, has been a guiding light for Jessica. She has selflessly put her life on hold to bring Jessica back to health.

I want to thank all the people, known and unknown who continue to fund raise in order for us to meet our financial obligations.

I want to thank the Lutheran Church of the Resurrection in Garden City, NY, who continually watch out for Michelle, Katherine and myself. They continue to provide meals weekly for us and have selflessly provided financial support.

I want to thank the Garden City Fire Department which continues to provide friendship and support.

I especially want to thank Dr. Cantu and Dr. Luigi who with their medical knowledge have given Jessica a new life.

I want to thank Dr. Rainbow for the endless love and support she has provided to Jessica and my wife.

I want to thank all the wonderful new Mexican friends they have made while here in Mexico. They have been so supportive of Jessica and my wife.

And, most of all I want to thank our Lord and Savior, the Lord Jesus Christ who though I stumble and fail, has remained steadfast in his love, strength and power in seeing my family through these trying times.

Happy New Year.

Love

Daddy/David; December 31, 2010 at 11:49 PM
Rosemary and John said...: Dear Jessica,

I find myself opening and looking at this photo and re-reading your posting, again and again. Trying to find the words to say, to express what is felt in our hearts for you and your family.

John and I are simply overwhelmed by your amazing progress. We thank God, your Mother, your family and supporters and of course, Dr. Cantu and his team for never giving up on you and for always believing this day would come.

One day at a time in baby steps have brought you so much further than anyone could dream of in such a relatively short period of time (since you were discharged from the hospital).

They say: "Faith is to believe what you do not see". You and your family have never lost faith, even in the darkest of hours. Seeing you now, is virtually witnessing Faith in progress.

May God continue to restore your health and may your every dream come true!

Love,

Rosemary & John; January 3, 2011 at 8:42 AM
5yearmed said...: Jessica, Best wishes for a happy new year to you and your family. Your story is an inspiration to all... You and your doctors are making medical history.; January 4, 2011 at 2:02 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.