Jessica's Journey: Maundy Thursday

Thursday, April 1, 2010

Maundy Thursday

Blessings To All,

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To view Jessica on Fox TV, Click on Link Below:
htt p://www.youtube.com/watch?v=PW_vstm0bS8

Today is Maundy Thursday. The word "maundy" comes from a Latin word meaning "mandate" - to give, to entrust, to order. The term is usually translated as "commandment" from John's account of this Thursday night. According to the gospel, as Jesus and his disciples were eating the final meal together before Jesus' arrest, he washed the feet of his disciples to illustrate humility and the spirit of servanthood. After they finished the meal, as they walked into the night toward Gethsemane, Jesus taught his disciples a "new" commandment -
John 13:34-35:
"A new commandment I give to you, that you love one another, even as I have loved you, you also ought to love one another. By this everyone will know that you are my disciples, if you have love for one another".

May we all "remember" today - God's true act of deliverance for us all!

In God's love,
The Stevens' Family*

Jessica is continuing to take her small steps towards recovery. We are currently trying to keep her sitting up in bed more during the day, to try and get her body accustomed to the sitting up position. During the boosters, we prop her up with pillows, and slowly raise the head of the bed. The other day we tried to do this on our own, and she fainted. Dr. Cantu said I probably tried to raise her too fast. Jessica is a very determined person, as you all know. Please pray for her to continue taking these small steps and the strength needed to carry them out! Also, pray for less painful days.
Also, I presented Kerri with her ketamine coma bear that I made for her as she left the hospital yesterday. May God bless you and your family as you travel back home to Pennsylvania to continue your road to recovery.
Also, pray for John who is here getting his boosters this week. May they accomplish what they need to do for him to feel less pain as well.

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

4 comments:

Anonymous said...: Dearest Jessica and Gina, Good morning! It is a beautiful sunny day here in GC, which is a blessing as it has been raining a lot lately. But we needed the rain, and now the trees and shrubs are starting to bud and bloom. Also, the little bunnies are starting to come out! :) I hope it is a good day for you there as well. I am so proud of you, Jess and Gina, for staying strong and determined, and working so hard to make sure the little steps take hold. Gina, I am so glad that you were able to go to Palm Sunday services, and that Jess, you are able to get the boosters you need. I keep you in my prayers and my heart every day. Hang in there! Love always, Angel xoxoxo; April 2, 2010 at 8:10 AM
Nancy & Joe said...: Good Morning Musical Bed Babes!
I think Jessica likes your bed better Sarah Gina! The term "Slow Going"..makes more sense to me today hearing the bed raising story.

Jessica it was so nice having your sister Michelle and your Gramdma Josie and your Dad join us at church here on Marco Island for Maundy Thursday. Pasor Kevin was so delighted to see them as they were to see our church family!

May today be less pain than yesterday and more FUN! I can hear you ladies singing all the way here!

With love and thanks for the closer relationship you have helped me to have with our Dear Lord.
Nancy; April 2, 2010 at 8:52 AM
Jane said...: Jessica & Gina -
Always thinking of you...following your blog...encouraged by your "small steps" approach and progress. Wishing you both the joy and hope that is Easter!
- Jane; April 3, 2010 at 11:45 AM
Anonymous said...: Dear Jessica and Family,
I came across your blog and have spent hours reading/crying and marveling at Jessica's strength and journey she has been on. She is such a beautiful girl that deserves her life back. See.. I came across your blog from a friend of mine (Emily) who's finance, Greg is currently in Tampa ready to receive his first Ketamine injection today with Dr. Kirkpatrick... currently as I type this! I know myself and others have been on pins and needles wanting to know the latest updates and Greg's progress. After his initial evaluation Dr. Kirkpatrick suggested that (depending) on how the injections go, he may still benefit from the Ketamine coma study in Monterrey. As I have searched to learn more and understand this horrible disease I have found your blog to be very inspirational and educational on RSD. I just wanted to let you know you now have one more prayer warrior out there. I am praying for Jessica's strength to endure and recover in the days ahead. God is so amazing!! I am glad I stumbled upon your blog... I am looking forward to reading about Jessica's progress.

--Leslie (Michigan); April 6, 2010 at 12:06 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.