Hi to all,
I didn't know what I was going to blog today and then Jessica asked me a very poignant question: " Mommy, what is real and what is a dream??? Today, Jessica realized more of who she is and with that realization came many, many questions!!! Apparently she thought that the past few weeks were all a part of a bad dream. The doctors she has met, such as Dr. Cantu (who she calls Dr. green-shirt, because she remembers him wearing that color often in ICU), Dr. Luis (who she refers to as Dr. Luigi (maybe because of the Italian she took in high school), Dr. Ramos (who she calls Dr. Medusa, because when she was having bad hallucinations after the ketamine about seeing "worms", he came in and began to recount the story of Medusa, from Greek mythology) or Dr. Cynthia (who she calls Dr. Cynthia Lyme, because of her medical thesis being about lyme disease) and Dr. Eva ( who she calls Dr. Eva Pink, because she loves that color) --- all these doctors who she thought were all part of a dream, she now realizes are all real!!! That she is indeed in Mexico and that she just underwent a ketamine coma treatment, that only @104 people have tried in the whole world!!!
As you can imagine, all she keeps saying is that she wants to go home - and I can only imagine how she is feeling! Imagine being in a hospital, in Mexico, you don't have your full memory - it comes and it goes, the nurses speak another language, I could go on and on......to her, at times, it is very frightening.
So today, please keep Jessica in your thoughts and prayers once again. Pray that what was once a bad dream, becomes a more peaceful reality. And that as she takes the small steps ,or as Dr. Cantu so gently says to her: "Small steps --- huge advances"; she can better understand the road she has endured, the road she has taken and the road to better health that is up ahead!!!
In God's love,
always,
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!
5 comments:
Jessica's Mom -- you are awesome. I recently read about a clinic that has helped people, even with your daughter's condition. I don't know if it is something you want to look into or not but if Jessica still needs more improvement after the ketamine you might want to explore this:
http://www.sierraintegrative.com/testimonials/moore.html
I am fighting lyme too, but thankfully not RSD.
Real is the love you share, and the beauty of Jessicas,, thats real, and that will be joined by a better decnt health for her soon. in deed, in Gods mind, she is now Healed,, because she is never sick in her spirit..
so, instead of asking for her recovery , lets focus on give thanks to God, becuase it already happend. It may be just a matter of we realize that as a done fact, and that will show really our trust, confidence, and faith in this truth,, and the next moths and years should be miracleous¨ for you,, and throuhg you,, for many of us too..
HUgs,,
Danny (Colombia- HBOT),, so you remebre who i am,, i will like to share more directly to you in the future,, you alreday have my info in past comments...
a big kiss and hug to your princess.
and the to her question is: The Spirit invencible of GOd within you is the real,, even if it seesm blury for the moment,,
i bet, she will show to us a miracleous recovery very soon..
We are awaiting that miracle with open arms that you speak of Daniel!
Thank you for praying!
Nancy
"You,O Lord , keep my lamp burning; my God turns my darkness into light." Psalm 18:28. Jessica, each day God is helping you move further into the light by restoring your memories. We thank Him for that and pray that each day you will progress a little bit more. Love to both of you.
Linda
Hi Mrs. Stevens and Jessica,
I will definititely continue to pray for these things. I know after my coma, I often "saw" Dr. Cantu, Dr. Trujillo, and a few other people that I would talk to and carry on conversations with, that were actually not really there. When one of them would actually come in, I would always ask them, "Are you really here." They would tell me yes but I would promptly inform them that they told me that every time. It was extremely frustrating and quite scary. I am sure that is intensified with Jessica loosing more of her memory.
We continue to pray for you both here. Hang in there Jessica. This too shall pass.
Love In Christ,
Lindsay Spengler
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