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!
23 comments:
hey jessica ,
hey mommy i am sick at home and i am a patient at san bayberry tec not san jose.....but trust me i wont be making an ice cream cake anytime soon!! jessica "i hope you dont need another surgery on the recto" haha i am really bored and i just wanted to say hi and wish you well. i went to track yesterday and we ran 10 laps! but i am doing it with my friends Gen erin and paige.....bye love you!!! <333
Sorry to hear that the day was a struggle. I hope and pray for relief for Devon and Justin so if you see them, please pass along my greetings and let them know they are covered in prayer from here. Jessica as well. I will pray that this new procedure is just the ticket! How are you feeling about it all, Jessica? You are such a trooper! Hold onto that strength and faith that things will get better. God will sustain you through it all!
oops about the cake! I am amazed you managed to get one made at all! You have some rare gifts! How good that you were able to laugh about the melting of it. Laughter can be even better than the eating!
Thanks for keeping us so well posted on what is going on over there.
Be well
Fern
Hi Jessica
I'm Jenn from Resurrection. You probably don't remember me but I do remember you and your family. I wanted to let you know that I follow your blog everyday and pray for healing for you each night. I too have RSD but nothing like yours and I can only imagine a glimmer of your pain...however, you are an inspiration to me. Your thoughts and faith have inspired me. Your courage and determination to fight this disease and win will help you conquer this horrible disease. My prayers will continue to be with you and for your family as well. May God continue to keep you in his loving arms. Jenn
wow they melted your cake...thats priceless, me daddy and michelle will all have a good laugh about that too! hahha..atleast you tried!
Dearest Jessica, Only your mother would try to make an ice cream cake in the hospital!!! I hope you are feeling better today. Hang in there!! Dearest Gina, Only you would try to make an ice cream cake in the hospital!!! I have always thought that you could have a very entertaining and successful cable access show with your creativity, sparkling personality, and friendliness. Remember the ice cream shop that you managed on Nassau Boulevard? You got that place all shaped up and were the first to start offering birthday parties there! Remember the shell-covered cornice that you made for your bathroom on Huntington Road? You must have glued a couple thousand shells on there one at a time! It was beautiful! I'll also never forget the day I came over and you had just finished painting the whole kitchen (yellow, I think) because you needed a new color in there!! Gina, you have always made things happen. You are still making things happen. Keep on praying and doing and making miracles happen!!!! Always thinking of you two amazing women- Love always, Angel
God's Blessing
Gina and Jessica...I'm glad to hear that you keep pressing on. What strength God has given you. You are inspiring everyone who hears your story. I'm glad Pastor Browning was able to visit you! He is so impressed with your strength and faith.
I'm not sure if you were aware, but Elisabeth and I had a baby girl almost a month ago now. We love her with everything we have. We pray that our love for her would be as strong as yours. Your family is on our families heart, and in our prayers.
Nathan (and Elisabeth and Abigail) Erb
Good morning gals!! May our Dear Lord bring peace to Tec San Jose patients and staff! I pray the procedure brings relief and healing to you Jessica. What a wonderful Mom you have and a hoot to be around. How on earth does she stay up when the cake is down?? I love how you are an example to all those that you touch of God's ever enduring love and how he uses you Sarah Gina as a gift to those you meet.
May today be a wonderful day of healing and more laughter on Floor 8 in God's workshop of healing hands and hearts.
Our love to you,
Nancy & Joe
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