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:
Sara Gina & Jessica,
Last night I had a dream,for most people this is not a big deal.....however I very rarely dream,maybe 2 or 3(at most) a year.Well dreams are strange if you ask me,maybe even insightful in many ways.Anyway,it had a Vegas setting(who knows why) the lucky # 7 was flashing every where along with Ketimine # 7 with lights flashing saying winner.This occured over & over all night long for me. I woke wondering if Jessica was on # 6 or 7 & wanted to instantly know so on my computer I went for the update.Only to find it was # 6.Then a busy day to include the Naples fundraiser,drinks with the team after & dinner with Ray & Carol(our new friends)home late & very tired(hope I'm making sence)I come home to check the blog & OMGOODNESS it's # 7 K.Booster!!!! I'm feeling so strongly this is the one!!!! The lucky one girls! I told the team of my dream & we all got goose bumbs & cried because we are all praying for the very same dream!!!May my dream come true PLEASE GOD!
Sweet dreams for you both tonight & always,
Jodi XOX
Paulette-loss of a loved one is always difficult. I send you Peace and Prayers.
This week I learned about spinal cord stimulation for helping those in pain. Since so many that read this sight have some pain I thought Jessica would be happy that I used her sight to help someone with this information. Spinal cord stimulation has been in existance since the 60's. It is very helpful for those with any kind of pain, including circulatory problem. Please check it out. We are hoping that my daughter's husband, Robert Graves, will be helped before or after his back surgery through this.
Jessica dear, may you have some pain free moments, more and more each day.
Gina I am so excited that your friend is visiting. I have been to her shop and her home and I know that she is a wonderful person. I know that she will rejuvinate you.
Wish that I could be with you.
Linda in Saratoga
Dearest Jessica and Gina, I am so glad that Cecilia is coming to be with you. She will bring a wonderful energy into Room 844- things happen when Cecilia is around! :) I have been thinking about Jessica and all the difficult challenges she is facing. Jess, you are an amazing example of what faith can do. Your faith is moving mountains, one rock at a time. Although obstacles come into your path, the forward steps you are taking (moving your legs!!!) are miraculous. And Gina, you are an amazing example of what an incredible gift is unconditional love. Your witness and writings on the blog are bringing a lot of people closer to God in prayer, as well as giving us all a shining example of a glass full to the brim even as difficult times surround you! You are both amazing, as are David, Katherine and Michelle, who are all going through this with you from a distance. I keep you all in my prayers always. Hang in there!! Love always, Angel
Hope Ceci got there ok. She brought with her all the love and support that we could stuff into her pockets. Hope they didn't confiscate any of it at customs. Ha!Ha! We wanted you to have every bit! Lots of love, enjoy your visit together. Love, Bonnie
It sounds like it's about to be Fiesta Time in Room 844! Between the love of Cecelia and Jodi's #7 Dreams... wonderful things are in the works!!
Love you girls!!
Nancy
Praying for all the best & am so happy you have love & support with you.It's going to be a GREAT week!
I think about you both & your husband/father & daughters/sisters & Doggy,& pray about the days when you will all be together.
Peace Ladies,
Jodi XOX
Dear Gina,
I hope my sister got there ok, Please give Jessica a hug from here in California, and I just want you and Jessica to know that we have Jessica in prayer groups every week. I know that the Lord always perform miracles and we will keep waiting for one in Jessica soon recovery. I will keep in touch and for now may the Lord be with all of you and give you strength every day.
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