Jessica's Journey: 19 Days Till Christmas!!!

Sunday, December 6, 2009

19 Days Till Christmas!!!

SPECIAL NOTICE: I have just heard from the Mah Family at Lymelinks that they have brought in extra help - so if you want to order Jessica's necklace for Christmas presents, they can be ordered thru this weekend at the link below and they will arrive in time for the holiday!!!

This necklace is dedicated to Jessica's struggle with Lyme Disease and RSD. It was made to honor her commitment to Lyme disease awareness by Lymelinks.
To order Jessica's necklace, Click on NEW Link Below:

http://www.etsy.com/view_listing.php?listing_id=35743111.

To view Jessica on Fox TV, Click on Link Below:

http://www.youtube.com/watch?v=PW_vstm0bS8

FUNDRAISER TODAY IN NAPLES, FL:

Holiday Bazaar & Vendor Fair
Today = Sunday- December 6th - 2:00 - 5:00 PM
Indigo Lakes Clubhouse-Naples, Fl.
Call Nancy (419)350-9058 for gate code

***Put on by Lisa Reber & her Stampin Up friends, and, Joanne Hartmen & Team Jessica!!!***

Over 20 Different Vendors - Door Prizes every 15 mins.!
Bake Sale run by Oak Ridge Middle Schoolers!
***Bring your family & Friends!!!***

Hi to all our family & friends,

Please pray for Jessica today as she has not been feeling very well these past few weeks. The gastrointestinal problems coupled with the pain she has been experiencing on the entire right side of her body and the severe headaches and vision problems, have made her feel like she "has been hit by a bus". Dr. Cantu ("Green Shirt") gave her a booster yesterday and he is trying everything he can to get her to feel better. Dr. Rainbow also came by, as she does every day, and brought her custards and some other things to try as well. Thank you all for all your continued prayers for Jessica's healing! Pray that she feels better really soon.

I can't believe how quickly the holiday season has come and how very soon another Christmas will be upon us! We have decided that it is important for us to be together for Christmas, as we have never had one apart, even though the past few have not been all we had hoped for with Jessica so ill. So David has checked with his doctors and is cleared to come to Mexico for a few days with our other daughters Katherine and Michelle. I can't wait to see them since the last time we were together was in August before coming to Mexico! I have a small "Charlie Brown" Christmas tree in our room that was given to us by Pastor Browning when he was here from N.Y. Dr. Rainbow also bought us balls and tiny lights for the tree. The "angel" topper to the tree was given to us by Cecilia when she was here. So, when the family arrives, we will have "Christmas in Monterrey". It will certainly be a different type of Christmas for us, but, as long as we are all here and spend a few days together as a family, that's what is most important!!!

In God's love,
Jessica's Mom

"But when the kindness and love of God our Savior appeared, he saved us, not because of righteous things we had done, but because of his mercy". Titus 3:4&5

***To post a comment, CLICK on Comments below***

7 comments:

Madelon said...: Good morning Jessica and Gina,
Winter has arrived here on LI...a chilly 34, but the sun is shining after a day of a cold rain yesterday. I pray and hope that the sun shines in your lives today and that there is some relief of Jessica's pain. Today at church, I know that there will be prayers for Jessica and I will continue to pray for her healing.
How wonderful that your family will be together for Christmas!
Keep the faith...our prayers are being heard!
God's blessings on you both!
Madelon; December 6, 2009 at 7:39 AM
Anonymous said...: I am really hoping that Dr. Cantu is able to figure out how to relieve some of the added pain and illness that Jessica is experiencing. I have suffered many migraines over the years and coupled with the nerve pain, these can be excruciating. I will continue praying that God intervene.

How wonderful that you are already putting up a few decorations for the season. I hope that it does something to lift spirits when they are low. I know that "hit by a truck" feeling and it does knock the spirits down from time to time.

The wind has been blowing here on the island. Kept me awake through the night both with the sound and my body which reacts negatively to the changes. But the sun is shining this morning and that is a spirit lifter in itself.

My husband began to decorate for Christmas yesterday. It is something we have often done together over the years I have been sick, but this year he is on his own. It is interesting to watch a new eye for where things should go!

I sent you an email with a couple of questions so if you get a chance can you respond?

I am thrilled to pieces that you will all be together for Christmas. It doesn't matter where you are just that you are together!

Hope your day goes well and talk to you very soon

Sending love and prayers your way,
Fern; December 6, 2009 at 11:14 AM
Marianne Cap said...: Dear Jessica & Gina,
Last week "on Thanksgiving" I was cleaning the last roasting pan. I didn't know someone had put the turkey carving knife in the sink, I went full force onto the knife and needed six stitches to close it, Jessica the whole time in the ER all I could think about was you, The pain was indescribable, They couldn't get me numb to stitch, For those moments I got a glimpse of what your pain has been for all these years, You are such an inspiration to everyone, Your courage and strength leave me in awe, I continue to pray for you everyday, I'm so happy you will all be together for christmas. May God bless you always. Love, Marianne; December 6, 2009 at 5:43 PM
Anonymous said...: How wonderful that you will be all together for Christmas! God is good!

Isaiah 40:29
He gives strength to the weary
and increases the power of the weak.

May God bless your family and heal your sweet Jessica very soon!

With love & prayers,
The Turners; December 6, 2009 at 7:09 PM
Anonymous said...: We're so happy you will all be together for Christmas celebrating our Savior's birth..We will be praying as always for continued healing for Jessica and also for safe travels and a blessed Christmas for all of you together!
May the light of Jesus shine brightly for all of you at this time.
Hugs and kisses
Angela and all the boys xoxoxoxo; December 6, 2009 at 9:10 PM
Anonymous said...: Christmas together as always.
This is good news.

Sunday night is teen night Mass in Saratoga. These are some of the words to the communion song COME TO THE LORD. Do not let your hearts be troubled. Children do not fear. Though you suffer as I suffered, I am always near. Come to the Lord; come to the table of lasting life. Bring your burden; tjere's no price, just come to the Lord.

love from Saratoga,
Linda; December 6, 2009 at 9:58 PM
Anonymous said...: May God continue to guide and protect you. I think of you every day and pray that relief and recovery will come for Jessica.

Anne K; December 6, 2009 at 10:54 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.