Hi to All,
Once again - special prayers are needed for Jessica. She was experiencing some very weird symptoms yesterday afternoon into today and they may be attributed to a new medication that was added. With Jessica, she can have different reactions to meds and how she metabolizes them. This is something that we have had to address in other hospital settings as well. We are awaiting the results of tests as we speak. So pray for her once again today, really hard, that these small steps she continues to take can be "easier" steps than they have been. We know that God is good and his timing is perfect. We hold that thought in our hearts and minds every day!
With love,
Jessica's Mom
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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 illThe 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 lesionsJessica'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 campFour 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 rashDuring 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. KirkpatrickUpon 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!
7 comments:
Isaiah 41:10
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
Hi Jessica and Mrs, Stevens,
We will definitely be praying. I know there were times we thought, "How could times be any more difficult than prior to the coma?" Well, somehow, in a different way, they can be. The questions, the lack of answers... it's a completely different type of battle than what was fought before the coma. We will be praying for you steadily.
Love you both,
Lindsay Spengler
Dear Sarah Gina and Jessica,
A few minutes ago a wonderful man (called Vinnie) came to my door with the most beautiful flowers.
Sarah Gina your brother is as sweet as the flowers and I'm so glad he is going to be going to help you both on Jessica's Journey to health!!!
I have to go meet with Fred's Diner about the Fundraiser for Oct. 3rd. 6-9PM...so I will write later tonight!!! I love you girls of Rm 844....Keep Strong...and Focused on the GOAL...love Nancy
Jessica and Gina, Your strength is incredible!!! We are with you all the way. God Bless and hold you both in his hands, love, Bonnie
Dearest Jessica and Sarah Gina, I miss you so!
Leaving Wed. morning was the hardest thing I’ve ever done. How do you share such a private and personal time with someone you love and go through the ups and downs of the journey together and then just LEAVE!?!? (and keep your emotions in tack at the same time)
My goodness…where did the time go? For me it went too fast. My prayer for you both is quick relief from the pain Jessica has had, especially in her head. I still can’t figure how Jessica endures and still has patience. I would not be so “good” if I was trading places. Just watching you Sarah Gina care for Jessica gives me a much deeper understanding of the unrelenting love of a mother. I hum the “I Know A Place Where We Can Go” song all day and night. It will be forever with me.
Jessica I believe with my whole heart that everything you are enduring now IS the journey towards the Vision that God has given you of dancing again!! Oh my goodness… if anyone deserves it you do. Brilliant is what you are Jessica! The things you said to us were not only profound but so often funny and uplifting to us. We want to lift you up to God to receive all his blessing and make you well again! God has a plan and we can bet on that!! I thank you Dear Lord!!
I am there with you in my heart & prayers and will be everyday until the Ketamine and Dr. Cantu have done their Magic! I especially love Dr. Guadalupe V. “Dr. Rainbow” as you call her Jessica. She is an angel sent to comfort and help you and Mommy.
Sarah Gina what a gift that you know so much about medications and Spanish! You are so helpful to the nurses with your knowledge, even if they may not even realize it. They are lucky to have you helping!
Keep up your fight for LIFE SPIRIT …You will WIN!
I love you so,
Nancy, aka The girl on the floor with 30 kids!
To all:
In this entire ordeal we have found new friends, strengthened old relationships and have discovered that God works through many different kinds of people.
I don't know where this will end. But I do know that God is being glorified throughout this trial. He has been awesome and so compassionate to me and my family.
God Bless all of you who read the blog, leave comments, make Michelle and me dinner,have donated hard earned money and to those who are working on fund raisers to help offset the massive bills we are incurring.
And to Nancy, words cannot express my gratitude for the time you gave up to be with Jessica and my wife.
You are an incredible person. And so is Joe your husband who had to survive without you for so long. His was a sacrifice also.
God Bless
David Stevens
Dearest Jessica and Gina, Hang in there, beautiful ladies! When everything possible is being done, and it is, and all the prayers are being said, and they are, it is the hand of our awesome God that is working behind the scenes in ways we can't possibly imagine or fathom. From your own room, 844, in the little town of Monterrey Mexico, with your endless love and faith, mighty struggles, and determination to hang on, you are bringing people from all different places and countries to God in prayer! You know, this reminds me of the story of David and Goliath, where Jessica is like David and the RSD/Lymes is like Goliath. Remember who won that one with the help of the Lord!!! Go, Jessica!! Always keep the faith... Jessica and Gina, God is working miracles in you and through you. Keep hanging on! Every day is an important step in the journey. Love always, Angel
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