Friday, September 18, 2009

Still Struggling.......

Hi to all our family and friends,

Jessica can use a few extra prayers or "shout-outs" to God from you all today! The doctors are still trying to uncover what medication Jessica's body is reacting to. You see, even here in Mexico as in other hospitals before, she does not "present" or follow the patterns of other patients. Her reactions to different combinations of medicines are not of the norm. Just as her illnesses have not followed a typical presentation in their complexity. Speaking from experience, as I have been in many hospitals before between my daughter Jessica and my husband David - always remember this --- YOU know the patient the best! Better than the nurses and better than the doctors. You are their caretakers and more importantly, their advocates, and it is OK to express your concerns and explain what works and doesn't work for the patient - your loved one! I think that ultimately it helps them, it helps you, and more importantly it helps the patient!

So, THANK YOU, for continued prayer for my sweet Jessica, and may God bless you all. You are all in my thoughts and prayers - STAY WELL!

Sarah Gina
(Jessica's Mom)

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


Anonymous said...

I hope and pray Jessica will be healed. I think of you and her throughout the day. Faithful in Prayer, Crystal Ulmer

Anonymous said...

Hi Sarah and Jessica - Here on Friday thinking of you and praying that this challenge too will be overcome. Will miss you when I visit Florida next week but do hope that by the time I make my next trip down, we'll all be together laughing at Buca di Beppo in Naples. Love, Barbara

Nancy said...

Sarah Gina, this is for all the ones that love you so.

It was sent to me and I know you can't listen in the room to it but it's a gift for those commenting to you.

You can hear it when Jessica is able, eh!!It's tremendous and moving!

Four Men (Il Divo) singing Amazing Grace inside the Coliseum in Rome .
Click on the link below for a most enjoyable 4 minutes. Bagpipes and all.

Love Nancy

Anonymous said...

Dear Jessica and Gina,
I just read an interesting quote - "Out of difficulties grow miracles." We'll keep praying.
God Bless,

Anonymous said...

Hi Jessica and Mrs. Stevens,

We will continue to pray alongside so many others. I know how difficult it is to be "outside the norm" and symptoms are unexplainable. We too were in many hospitals with the same response, "We've never seent this." As frustrating as that is, you are so right, YOU know us better than anyone. We will continue to be praying for you and for wisdom for all the doctors involved. I sent Jessica one of my top favorite songs that I used to listen to when I was struggling. (The list is probably at least a mile long but this is one of them.) :) It's called "Promise of a Lifetime" by Kutless. The link is included below:

We love you guys and are here if we can do anything.

Love Always,

Lindsay Spengler

Anonymous said...

Jesssica God has a special angel there with you, keep being the strong person that we have all discovered in you. I am keeping you in my prayers. Jacquie

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!