Jessica's Journey: Special Prayers Needed....

Thursday, June 2, 2011

Special Prayers Needed....

Hello family and friends,

I feel guilty for not frequently updating this blog over these past few months. Jessica has been doing so well. Her healing is truly a miracle and I thank God everyday that I have my daughter back.

She has been having GI problems and pain in her abdomen, underneath where her feeding tube that was in for 3 years had been. This past week the pain escalated and there was something protruding out from where the tube had been.

Dr. Cantu brought her in for testing yesterday and it was determined that a granuloma has formed in that area. It has infiltrated the surrounding tissue and muscle and needs to be removed. Jessica’s surgeon, Dr. Balli, has told us that it is very rare for this to occur many months after the tube was removed, however, we all know that with Jessica- things never go ‘normally’ or as the medical textbooks say that they should.

Any type of surgery is very risky for an RSD patient and it is really not something you ever want to do on an area that has been affected by the disease, as this can cause a re-triggering of pain and cascade of other symptoms. We know this fact. However, we also know that our God is greater than any ‘fact’ or medical statistic.

Jessica has been feeling and doing the best she has these past few months and we will continue to claim her healing and victory over this illness!! The huge blessing in all of this is that it happened while we are still here in Mexico, where we have Dr. Cantu who can use Ketamine during and after the surgery to treat the RSD.

Please pray for wisdom for Dr. Cantu, Dr. Balli, Dr. Luigi and all who will be involved with Jessica’s care during this surgery, for peace and strength for Jessica and I as we prepare to go back to Hospital San Jose tomorrow, and for no complications or infections to prolong our time spent in the hospital—which will hopefully only be 1 week.

Jessica is going into this with the most positive attitude. She says that as long as she has her “dream team”—God, Me and Dr. Cantu—along with ALL of your prayers—she can overcome anything.

We hope that all of you are well.

In God's Love,

Sarah Gina

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

17 comments:

Rosemary and John said...: Dear Jessica and Sarah,

There is no doubt in our minds that you are both being watched over by many Guardian Angels. God has taken you to Mexico for a reason. Each time you look at Jessica and see her progress, that reason becomes clear. Never loose sight of how far you have come. Remember that each time there was a "setback" it was followed by steps forward! This is but another road of your journey leading Jessica to a complete recovery and to coming home. Prayers and patience will get you through this. Don't look back, live in the moment, take it hour by hour...this too shall pass. We love you guys!

Rosemary and John ...xoxoxoxo; June 2, 2011 at 12:02 PM
Fern said...: small steps... giant leaps, right?! Jessica, I am constantly praying for your healing but will pray with a little more direction now. God was strenthening you for this fight, that is why you did not get it sooner! Sending you gentle hugs and a big giant one for you, Sarah. My thoughts will be with you, look forward to hearing how well everything went
As a side note, I think it was Dr Balli that did my port when I was there. If so, he is a very kind and humorous man. There is a good reason that both he and Dr Cantu are close friends.
May God give you both sweet dreams, a tiny piece of heaven to hang onto and all our love!; June 2, 2011 at 12:45 PM
Anonymous said...: This was unexpected but as you pointed out you are fortunate this happened while down in Mexico!

We have NO DOUBT God will get you through this. He is trust worthy and true and He has brought you so far.

May God use this time to bring your sweet Jessica further down the path to complete healing.

May God continue to watch over you and comfort you as you wait on Him.

With love and prayers,
The Turners; June 2, 2011 at 7:44 PM
Anonymous said...: Hebrews 1:14
Are not all angels ministering spirits sent to serve those who will inherit salvation?; June 2, 2011 at 7:48 PM
Anonymous said...: Dear Jessica and Gina

Our thoughts and prayers are with you. Hoping all will go well and you will be out of the hospital quickly.

Love,

Ashley,Paula, Ray and Kevin; June 2, 2011 at 8:55 PM
Jennifer C said...: God Bless you, Jessica, and your entire family...I pray for all of you over these coming weeks-and always. This is a true victory over a very tough "opponent." And your grace and courage is amazing. Tell your dad JJ says HI!!!; June 2, 2011 at 10:43 PM
Anonymous said...: Somethng to help you pass the time as you wait upon Him:

http://thegospelcoalition.org/blogs/tgc/2011/06/03/harold-camping-jenga-and-our-father’s-secrets/

Unknown Even to the Son

What’s astounding about Jesus’ conversation with the disciples is that Jesus himself didn’t know the answer to their “when?” question. Think of that. The disciples ask God a question he can’t answer! In this case, in his humanity, he wasn’t privy to this information. He said, “But concerning that day and hour no one knows, not even the angels of heaven, nor the Son, but the Father only.” I don’t think we grasp the enormity of this statement. If anyone should have been in the “know,” shouldn’t it have been him? But you never hear Jesus grousing about how his head is spinning from all the possible contingencies. He’s never grumpy because he feels uncertain about the future, nor does he question his Father’s wisdom, faithfulness, or love. No, he just states that this is a secret that his Father has kept to himself. Jesus is our perfect example of how to walk ahead in faith through the dark. Jesus teaches us that we should expect God to have secrets. God’s not obligated to lay all his cards on the table for us. We can trust him.; June 3, 2011 at 12:20 PM
Anonymous said...: Praying, praying, praying ...; June 3, 2011 at 12:45 PM
Marianne E. Quinn said...: Dear Jessica,

My prayers continue for your successful surgery and progress towards complete healing. God is Good. He will get you through this bump in the road as you journey to Good Health! May Dr. Cantu, Dr. Balli, and Dr. Luigi have one of their Best days on the day of your surgery. May God Bless Them for doing His Work. May God Bless You and Your Family both in Mexico and New York.With Love and Prayers, Marianne; June 3, 2011 at 2:00 PM
Anonymous said...: God is in Control

This is no time for fear
This is a time for faith and determination
Don't lose the vision here
Carried away by emotion
Hold on to all that you hide in your heart
There is one thing that has always been true
It holds the world together

God is in control
We believe that His children will not be forsaken
God is in control
We will choose to remember and never be shaken
There is no power above or beside Him, we know
God is in control, oh God is in control

History marches on
There is a bottom line drawn across the ages
Culture can make its plan
Oh, but the line never changes
No matter how the deception may fly
There is one thing that has always been true
It will be true forever

He has never let you down
Why start to worry now?
He is still the Lord of all we see
And He is still the loving Father
Watching over you and me

watching over you...watching over me..
watching over every things..
watching over you..watching over me..; June 3, 2011 at 2:14 PM
Anonymous said...: http://stevensponauglewordpress.com/?p=559

Thanks for helping others make the connection. Only about five percent of population develops RSD, yet almost everyone suffers a physical injury sometime, in their life. If physical injury caused RSD, I believe most of the population would suffer RSD.

My theory is that toxins from mold, Lyme Disease, leaky gut syndrome, gliadin sensitivity, etc., precede appearance of RSD. Physical injuries can trigger temporary release of the cortisol stress hormone, which is immunosuppressive. When a physical injury triggers cortisol suppression of the immune system, inflammatory toxins increase inflammation and may cause RSD.

I think we would see many positive Visual Contrast Sensitivity Test neurotoxicity results in RSD patients, if testing RSD patients with the inexpensive visual neurotoxicity test, available at http://www.chronicneurotoxins.com, became standard protocol.; June 3, 2011 at 2:50 PM
davidrstevens said...: Hi Jessica,

Some of these posts are truly profound. The writers are correct. There is no need to worry or question why. God IS in control. He is aware of the situation and will handle it in his way and his time. Our job is to be faithful and believe he can do what we ask.

Love

Daddy; June 3, 2011 at 5:42 PM
Anonymous said...: Jeremiah 1:19
They will fight against you but will not overcome you, for I am with you and will rescue you,” declares the LORD.

Jeremiah 15:20
I will make you a wall to this people, a fortified wall of bronze; they will fight against you but will not overcome you, for I am with you to rescue and save you,” declares the LORD.

John 16:33
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

1 John 4:4
You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world.

1 John 5:3-5
3 This is love for God: to obey his commands. And his commands are not burdensome, 4 for everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith. 5 Who is it that overcomes the world? Only he who believes that Jesus is the Son of God.

Revelation 2:7
He who has an ear, let him hear what the Spirit says to the churches. To him who overcomes, I will give the right to eat from the tree of life, which is in the paradise of God.; June 4, 2011 at 9:14 AM
Laci said...: Saying lots of prayers and sending healing energy your way, Jessica! This is just a small detour on your path to healing. Lots of love! -Laci; June 4, 2011 at 10:42 AM
Anonymous said...: Still praying, praying, praying!; June 4, 2011 at 11:25 AM
Anonymous said...: Dearest Jessica and Gina, I am so thankful to our Great God for how far you have come in your healing. You are living proof that God knows the intimate details of our lives and helps us in miraculous ways, sometimes ways we could never have anticipated. The strength and faith that you have developed over the past few years will be powerful tools in overcoming the difficulty that you are facing now. I am sending you lots of prayers and hugs and positive thoughts. May God watch over your surgery, guide Doctor Balli and Doctor Cantu's hands as they medically minister to you, and gently hold you in His loving arms in your recovery. I will be praying for you. Love always, Angel xoxoxoxoxo; June 4, 2011 at 6:59 PM
Anonymous said...: http://www.rsdsa.org/index2.html

REGISTRATION ENDS JUNE 10, 2011!
Proceeds from the walk will underwrite RSDSA’s International Imaging Neuroinflammation and Neuropathic Pain research workshop this October
Register Today
Click here to register online
and set up a fundraising page
either as an onsite or as a virtual walker

June 26, 2011
Achilles Walk for Hope & Possibility
Central Park, NYC
8 am; June 6, 2011 at 8:28 AM

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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.