Friday, March 18, 2011

80,000 Views of the Blog!!! --About the "Journey" & UPDATE

Hello To All,

As we begin this Lenten season, I received an e-mail from one of my wonderful Monterrey friends Barbara. She is truly a special person and she attends the local church called Union Church, here in Monterrey. She sent along this devotional to Jessica and I that was written by Pastor Dave Long, a true man of God. It speaks of the "journey" that we are sometimes asked to take in our walk with the Christian faith. Barbara thought of Jessica and the journey she has had to take with her illness.

Here is the devotional:

Answering the Call to Journey

Genesis 12:1-9

God called Abraham to leave his country and go to the land that God would show him. It was the beginning of the journey to the Promised Land and it would take his family and future generations on a circuitous route until they arrived.

There was a promise that kept him going: I will make you…, I will bless you…, I will make your name…, I will bless those who bless…, I will curse those who curse…, all peoples will be blessed through you. He was traveling with a promise.

Cynthia Clawson is one of my favorite singers. She wrote, My journey has taken me through smiles and miles, fears and tears, doubt and faith, hope and light. It has been a struggle at times, but struggles sometimes help us grow stronger. My trip through this life has been a time to love and learn. It has been during quiet walks with the Master that I have grown most.

These are the lyrics to a song that she and her husband wrote and she sings: The Journey

I’m making a journey, Lord,

The greatest journey of all;

My steps may fail, Lord,

So please don’t let me fall.

The way is narrow, Lord,

And sometimes I feel alone;

And when my heart fears, Lord,

I softly pray this song:

Give me the heart to be pure,

Give me the faith to be sure,

Give me the strength to endure

All of my tribulations.

I need some courage, Lord,

To make it just one more mile;

I want to hold your hand,

I want to see your smile.

Give me the heart to be pure,

Give me the faith to be sure,

Give me the strength to endure

All of my tribulations.

No matter where our journey may take us – to another country or our hometown, through lush green lands or dry deserts, to fame and fortune or unknown and poverty – God has promised to be with us. So may our prayer be to keep a pure heart, to have an abiding faith, to have strength to endure all of our tribulations.

Journey well…God is beside you!

Union Church of Monterrey


Update on Jessica:

We hope that this message lifts you up during this season of Lent. We thank you all for taking this "Journey" with us and for all the prayers that have been offered on Jessica's and our family's behalf. Jessica has been having a few ups and downs, as you know, and with that a flare of her RSD in the right foot, right arm and stomach. We are forever grateful to Dr. Cantu for all he continues to do for Jessica and his perseverance, commitment and wisdom with this illness. We know that God is in control and we praise him always for all of his miracles and healing for Jessica.

On another note, we ask for your prayers for Jessica's Dad who will be undergoing surgery next week for hernia repair. We ask that all goes well with the surgery and his recovery and we ask God to guide the hands of his surgeon Dr. Greenstein.

Jessica and I are so thrilled to have Katherine here with us this week! We have not seen her since last June-except via Skype-and she was so thrilled to see how improved Jessica is since then! When she arrived to the apartment, Jessica was in her recliner chair to welcome her! They kissed and hugged (something that couldn't be done last year!) They have been enjoying their time together-reconnecting-and we all keep saying to one another how we can't believe that we can enjoy the hugging again, feeling the fresh air together again, seeing the beautiful blue sky, laughing again, listening to music, watching a movie, to see Jessica in so much less pain, etc.......I could go on and on! For me, as their Mom, it takes my breath away, and I have shed a few happy tears this week to see them together like that again! We praise God for all his mighty works, Dr. Cantu for all his love, and I praise my daughter Jessica-she is a fighter and her determination is amazing and inspiring!

May this day find you all well,

In God's love,always,

Sarah Gina

(Mom to 3)

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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!