Hola from Mexico,
Jessica is very slowly improving in regards to the symptoms she has been experiencing this past week. The "vibrations" throughout her body are now at a level of 6 ( 10 being the worse). Thank God for that! The neurologist is hopeful that it will all go away eventually and is happy that there is slight improvement with each day. Dr. Cantu would like to restart the ketamine boosters today, as we are a little bit behind due to the problems of this past week. When a patient undergoes the ketamine coma, it is the ketamine that acts as an agent to reverse abnormal brain activity and the messages that the brain is sending incorrectly to the central nervous system. The ketamine trys to "reset" the brain, just as you "reboot" a computer, by shutting it down and starting all over again.
The boosters that a patient receives after the coma treatment, act as a
reinforcement to that initial process. Every patient in the protocol is different and in that regard, receives the amount of ketamine boosters needed for that patient. Today, Jessica will be receiving her 2nd ketamine booster. Pray that the ketamine does the job that it needs to do!
Our "HOPE" and the reason why we came to Mexico was to undergo the ketamine coma and the ketamine boosters - it is what we and the doctors hope, and feel, will ultimately put Jessica's RSD (Reflex Sympathetic Dystrophy) into remission. Ketamine is the "magic" and the "weapon" of choice here in combatting the RSD and the unrelenting pain that is associated with it! Miracles have happened here with many other patients (i.e. Lindsay, Emily, Anna, Justin, Shannon, etc. to name a few).
So, what is HOPE? Hope is:
Having
Only
Positive
Expectations
I think that if you are hopeful about anything in your life, whether it be in relationships, finances, illness, etc. ; if you try (and I mean really try) to remain "positive" about the situation and turn off all the "negative" thoughts that will come out at you - then the "hope" remains and it cannot be defeated! The bible says this about hope":
Isaiah 40:31:
..."but those who Hope in the Lord will renew their strength,
They will soar like wings on eagles;
they will run and not grow weary,
they will walk and not be faint."
No truer words have ever been spoken!!!
May God Bless you all and keep you well. May he carry you in the palms of his hands!!!
And, as Jessica's nurse from N.Y. - Miriam - always said to Jessica as she would leave her room: " Have the Hope, you Have to Have the Hope!"
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!
6 comments:
Dearest Jessica and Gina, I am there with you in spirit! Jessica, I am so happy that your symptoms are getting a little bit better! We will keep praying and praying for you here. Our rosary group has put you and your whole family, especially your mom who is there with you, and all others who are suffering from RSD, at the top of our prayer list. My mom and dad are praying for you too! Gina, you are in my thoughts so often, I just wanted to let you know. Hang in there! Miracles are happening! Sending you both big hugs, and love always, Angel
Hi Jessica & Sarah Gina,
I'm happy to here there are baby steps (finaly) taking place, God knows that Jessica is (more than)deserving of a break! I can feel there is a change coming in a VERY possitive way for Jessica.I can not EVER imagine this journey that your whole family has been on because life has been normal for me & my family,(define normal,LOL)I feel like now is the time for "you" & life is going to become better.I don't know how to explain this feeling,it's just there is all I can tell you.
Always keeping the faith here in Naples.Bless you & peace to you & your Family.Not a day goes by that I don't pray for you!
Jodi XOX
SIX...we'll take a "6" knowing things are getting better with baby steps!! Prayers that the Booster is doing it's JOB and restoring health and positive energy back to Jessica.
The WORLD loves you as we are hearing from all parts of it, and God is the Pilot of the SHIP!
Smooth Sailing Jessica, sweet dreams!
Nancy
Jessica,
You were an angel to my son and I when I found you through Facebook almost 2 years ago, I wish you well and pray for you each moment.
To Jessica's Mom and family, I thank you for blessing this world with such a beautiful daughter. Jessica has been an inspiration and given strength to so many of us, stay strong, miracles do happen. We're rooting for you big time in Canada!!
Gina, Your positive thoughts and HOPE will surely help you through. Know that we are sending all our HOPE to you. By the way, saw that beautiful daughter of yours Catherine yesterday. That smile could lift anyones spirit. She is a doll! Love, Bonnie Hugs and kisses to Jessica!!!!
As I read the Bible this morning, I turned to the book of Job. Jessica, remember his story. He was a good man, a faithful servant of the Lord's, then one day his world came crashing down. First, robbers stole his belongings and slaughtered his servants, then all of his children were killed, then Job (like you) came down with a horrible, PAINFUL disease. Job did not deserve such suffering. "nobody suffered more, nobody deserved it less." Like you, Job went through great suffering. He struggled to do what seemed impossible: to keep on believing in a LOVING, FAIR God even though his world was crumbling. However, the ending of the story is a TRUE MIRACLE! I know without a doubt your suffering will end soon, stay Hopeful! Crystal Ulmer
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