To All our Family and Friends,
In just one day we leave by air ambulance jet from Tampa, Fl. to Monterrey, Mexico. The final preparations on this end have been many...from last minute doctor appointments to getting all our medications in order, to packing everything you think you are going to need in one suitcase per person!
The aide who is coming with us, Jessie ( another Jessica!) arrived today. She will be with us for the beginning part of the hospital stay. Then we will be having Nita, Diane, Nancy, and ...... coming down to Monterrey to help us as well. This is something that I cannot do alone and we will need supportive help for Jessica both during and after the coma. God has truly blessed us with tremendous support from family and friends - we are so grateful.
Now, on a personal note, as a Mom, and as Jessica's Mom, I am constantly amazed at what the human body can endure, but more importantly what the human spirit is capable of ---- my daughter Jessica is truly amazing! She is the strongest person I will ever know and I know she will be able to dig down deep and fight really hard to emerge even stronger and so much better than before - she deserves it and I love her so very much, more than words can ever say!
The bible says in ISAIAH 41:13:
"For I am the Lord, your God, who takes hold of your right hand and
says to you, DO NOT FEAR, I WILL HELP YOU."
Pray for Jessica.
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!
13 comments:
We think of you often and wish you well on your journey. Jessica your in our prayers!
Jessica,
I am praying for you........Crystal Ulmer, Flight Nurse
I will be praying for you everyday!! I know this procedure will work!!
Love youu Jess!!
I have been thinking of you and your family and praying each day. I am amazed by all of you...your strength, love and faith. Godspeed!!!
John Schlapp
As Sonny and Cher and God said,
"I got you babe"!!!
Hold on and fight!!
love Nancy
"Cast all of your care upon Him, for He cares for you." 1Peter5:7
God bless you Jessica!
Safe journey. God Bless you, the flight crew and all the Doctors, nurses and staff in Mexico.
You and your family are in our thoughts and prayers.
Carol & Ray xxoo
Thinking of You Jessica,
taking your trip tomorrow and I came across this quote and thought of all your pain subsiding and you returning to us as the emerging butterfly!
What the caterpillar calls the end of the world, the master calls a butterfly.
God Bless You and Your Mom and have a safe trip.
Best of luck with your trip and the procedure to cure you of this dreadful illness. We are thinking of you and praying for your speedy recovery.
Ed & Karen Moran
My dear sweet Jessica,
I pray that Angels hold you close as you travel tomorrow. I will be there when you wake up next Friday and can't wait to see your beautiful eyes. I love you sweetie and am more proud of you than I have ever been of anyone.
Nita
Dear Jessica, It's finally here! We will be praying for you, your mom, and your whole family while you're in Mexico. Miracles happen! Hang in there!
Love always, Angel
Dear Jessica,
You are in our hearts and thoughts all the time. We will pray for you and your Mom, Dad and sisters.You will always have a special place in our hearts and we know you will come home to pursue your dreams.You are a truly amazing person I don't know if I could be like you.
We love you and will see you soon.
Love Ashley, Paula, Ray and Kevin C.
Jessica and Gina -
Your descriptive and informative blogsite has given me an even better understanding of your three-year journey and why you two remarkable women are now headed to Mexico. Your strength, endurance, perseverance, faith, and hope are inspirational! You are in my thoughts and heart day and night. I pray that this procedure succeeds and we can all look forward to Jessica's improved health.
"If He brings you to it, He will bring you through it."
With hope and love, Jane Garypie
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