Jessica's Journey: A Special Christmas...

Sunday, December 12, 2010

A Special Christmas...

Blessings to All from Monterrey,

Wow! I can't believe that Christmas is only 13 days away. It seems like only yesterday that we were celebrating a magnificent Thanksgiving celebration here in the apartment with Jessica's doctors! That was such a very special day - and probably one of the most amazing Thanksgivings Jessica and I have ever had! Just imagine Jessica being able to eat turkey and all of its trimmings for the first time in years - and then - just imagine being able to share that meal with the doctors who have been by your side these past 15 months - and better yet - Dr. Cantu (aka Dr. "Green Shirt") carving the very turkey you are about to eat!!! I think it is so hard to put into words the joy that I felt for Jessica and her doctors that day --- it's beyond words and a memory that will be forever etched in my mind and in all the doctors and their families who were here that night! Not only did God bless us with wonderful company - but I must say - the turkey was the Best turkey I have ever made --- and I have made many!!! We all had a good laugh, though, when Dr. Cantu informed us all that the turkey was so delicious due to his wonderful carving --- hahaha --- and not due to the 4 hours or so it took me to cook it!!! Oh well --- I think I will let him have the credit for the turkey this time --- he deserves it!!! Also, there was not a dry eye in the room as they watched a special "Thank You" video presentation that Jessica had made on her computer to honor them. It included special photos and songs of her journey so far. I know it goes without saying how very proud I am of my daughter - she makes me so very proud to be called her Mom!

And, now, Christmas is once again upon us, and oh, what a difference a year can make!!!

For all of you who follow this blog and faithfully pray for Jessica each and every day - thank you All and may God bless you and your families during this --- the most special time of the year - Christmas - the birth of our dear Lord and Savior Jesus Christ!

Last Christmas, as you may recall, was a very difficult time for Jessica. She had been experiencing many difficulties post the coma, including major infections and the neurological problems she was experiencing with her eyesight --- she couldn't see --- her visual field was plagued by green static vision. That, coupled with the intense, unbearable pain, fevers, lesions, tubes, etc.......to name a few ...... made it a very stressful time to say the least! But, I do remember the Christmas miracle last year as her sight was restored after Dr. Cantu put her back in the ICU. They say that God helps to erase those painful memories in time, and, I am grateful to say, I try not to think and remember them as much as I can. But, I do think that it is important in life to remember where you have been. You have to reflect on the road traveled so far, to realize how very far you have come and how, with faith and prayers and the love and grace of God, and, in Jessica's case, amazing doctors, ALL things are truly possible!

We, as a family, are so looking forward to this Christmas! As I write this blog, Jessica is listening to Christmas music --- something she hasn't been able to do for a number of years due to her extreme noise sensitivity! Last night, we were able to watch a movie on TV called "It's A Wonderful Life" - something she also hasn't been able to do for the past years due to her photo-phobia - or extreme light sensitivity! I am cooking up a storm! For those of you who know me, I love to cook. It is my hobby and one that I enjoy so much --- it is a great stress reliever for me. It is such a pleasure to be able to cook for Jessica once again, and for her to be able to enjoy eating again - another thing she can now enjoy once again since she no longer has her J-feeding tube in her intestines! This morning, we had such a good laugh, over something so silly --- but --- even that is a milestone for us! You see, she can now laugh again, because, she is in so much less pain than a year ago! ALL of these "little" things are really "Big" things for patients like Jessica, who have experienced pain and sickness on a level that, even as her Mom, I can never, ever, really fully understand!

In just under two weeks, Jessica's Dad and sister Michelle are coming for Christmas. Katherine will be spending Christmas with her Grandma and my family in Marco Island and instead will be coming to Monterrey in January to help Jessica and I celebrate our birthdays.

It goes without saying, but, I believe that this Christmas will be a very special one. For Jessica, she will be able to enjoy all the sights, sounds, and tastings of Christmas - something she hasn't been able to do for a number of years. For me, I can honestly say that I will be able to "breathe again" this Christmas and just be happy in seeing Jessica happy again!

Remember that these are the special times of Christmas. A time when we reflect on the true meaning of Christmas - as we celebrate His birth - and all of its magnificence and splendor. It is because of Jesus that we have life! As a Christian, I know, that thru Him All things are possible and All things are New once again.... I know this, Jessica knows this.......our hope is that You know this as well!

Merry Christmas --- Keep Christ in Christmas!!!

In God's love, always,
Sarah Gina (Mom to 3)***

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

10 comments:

Anonymous said...: We are so glad you were able to enjoy such a wonderful Thanksgiving Feast with your Monterrey Family!

And there is so much to be thankful for. Jessica, your health has improved so much in the last year, it is truly miraculous how far you have come.

It has been a priviledge to witness such an amazing transformation, to see God's work unfolding before our eyes.

We are so happy to hear that your Dad and Michelle are coming down for Christmas. They will be so delighted with all the changes they will see.

May God continue to bless you and your family and complete your healing.

With love & prayers,
The Turners; December 12, 2010 at 3:34 PM
Lenny RIvera said...: Hello!

It is SO wonderful to read the blog... I check it often for udpates (and ask Dave too!!)...

Jessica's progress is a wonderful testament to faith and strength. Her improvements are astonishing!

May you all have a WONDERFUL Christmas! and Best wishes...

Lenny Rivera; December 12, 2010 at 4:03 PM
Fern said...: I share this joy with you as it has been so wonderful to hear how Jessica is living in the moment and finding new joys each day! Thank our heavenly father for all He has been doing! :)

It is a wonderful life is one of my all tinme favourite Christmas movies. I am glad you got to enjoy it together.

May God continue the restorative work begun and may your family be reunited again!; December 12, 2010 at 7:13 PM
Nancy and Joe said...: Hi there ladies!! What wonderful Christmas Magic is in the air!! Yes Jesus is the reason for the season! We are going to make a special birthday cake for Jesus thanking him and his sweet father for making all our wishes come true for you!! This is the best Christmas ever for all of us!

Have fun with Daddy and Michelle sweet Jessica!! Love you Sarah Gina!

Nancy and Joe; December 12, 2010 at 9:23 PM
Anonymous said...: Hugs, hugs, and more hugs!!! Jessica, your miracle gives hope to so many! I love you both. Wish I could have been there for Sarah Ginas cooking!! Love, Nita; December 13, 2010 at 2:14 AM
Anonymous said...: He was born of a woman
so we would be born of God ...
He humbled Himself
so we could be lifted up ...
He became a servant
so we could be made heirs ...
He suffered rejection
so we could be His friends ...
He denied Himself
so we could freely receive all things
He gave Himself
so He could bless us in every way!

May you know His love this Christmas and always,

With love & prayers,
The Turners; December 13, 2010 at 11:41 AM
Marianne Caparrelli said...: Hi Gina and Jessica,
It is so wonderful to read your posts! Jessica has come so far over the last year. We are so happy for all of you. We wish you a very Merry Christmas. May God continue to Bless you :-); December 13, 2010 at 7:18 PM
limegreenjello said...: This is wonderful.
Last Christmas was my first since my Lyme diagnosis, and it felt like a first Christmas all over again. And when I chart my progress from last year to this Christmas, I feel so lucky and remember everything I've gotten back.

Merry Christmas to you all.; December 14, 2010 at 12:14 AM
Rosemary and John said...: Dearest Jessica and Sara Gina,

The photo of your Christmas tree adorned with the Infant Jesus against the backdrop of the Sierra de la Silla Mountains speaks volumes.

For you to be able to celebrate this Christmas as a family and with pure happiness in your hearts is a joy that few people can fully understand.

Those who witnessed your journey unfold are almost speechless. It is hard to find words that express what is felt so deep inside.

It seems so appropriate that you are living up high now, towards the clouds and closer to Heaven than ever.

We give thanks to God for your "re-birth" and are humbled to know you.

Merry Christmas With Much Love,

Rosemary and John; December 20, 2010 at 8:47 AM
Anonymous said...: MY Lord...a miracle to just read your post on Thanksgiving with Jessica...yes he does hear the cry of his people...Jessica we are so happy for you and wish you a wonderful Christmas to be shared with your family. Enjoy each moment and of course, your moms great food. The Lord Jesus be with all of you and continue to shine his light upon you.
Have a Blessed Christmas and much peace and good health in the New Year!
Love in Christ
Angela,John, Ben, Dan & Michael xoxoxoxoxooxo; December 21, 2010 at 1:56 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.