To all,
I am typing this special message from Jessica today - the day we finally leave:
Hi all, Thank you all for all of your love & support!
I can't believe I am hours away from going to Mexico! I am excited, hopeful,... also a little scared, even though the thought of spending the rest of my life like this is far more terrifying.
I am so grateful to my family. My Mom has given up her life to be by my side and has been my rock. My sisters, Katherine and Michelle and my Dad have been so supportive and have sacrificed so much for me. Thank you!
I know that God has brought me this far all for a reason and I know that He will see me through this treatment too.
"I can do all things in Him who gives me strength." Philippians 4:13
POST A COMMENT
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!
15 comments:
We all love you Jessica and soon you will be flying like a bird...smooth and strong!
Safe journey to you and Mom!
Love Nancy
Jessica, this was in my inbox this morning...."All our dreams can come true, if we have the courage to pursue them."...and you sure do!! We are all proud of you!
- Walt Disney (1901 - 1966), Film Producer, Director, Screenwriter, Animator and Philanthropist
Jessica, another great VISION in my inbox... living the life of your dreams is a lot like sailing.
You pick your destination, hoist up your sail, make minor adjustments while the journey is underway, and let the wind do all the hard work.
In other words, imagine the end result, do what little you can, make minor adjustments while the journey is underway, and let me blow your mind.
Phe-e-e-e-e-e-e-w!
The Universe
Love Nancy!!!! Sail to Mexico!!
You are in my thoughts and prayers - The future belongs to those who believe in the beauty of their dreams. Eleanor Roosevelt.
Believe in your dreams.
Terri Stuart
Jessica,
That is one of my favorite verses! I will be thinking of you......Crystal
P.S. I hope you liked the card :)
Hi Jessica,
I just met your father here at Winthrop hospital. I wanted to wish you the best, I will say many prayers during your trip. Remember baby steps...Babies always walk in the end..stay positive.
Jena RN at Winthrop
Dear Jessica,
I love you so much and I am praying for you every day. I can't wait for you to come back from mexico so that I can see you again. You are the strongest person I know and I feel so blessed to have you as my friend.
Love Always,
Ashley
We will be praying for you. Marcia has had RSD since 1994 and also had Lyme disease....
Mark & Marcia
Carmel, CA
Dear Jessica.. We love you so very much and pray for the day that you come home. Your suffering will end and we will be together. Love you with all of our hearts.
Love... Aunt Carol & Uncle Anthony
PS I heard from daddy and know that you arrived safely in Mexico. Thenumber that mommy can reach me at is 941- 244 - 6143. Sarah this is my number to call on. Pleaselet meknowhowt5ocontact you... All my love
Jessica,
My mom is always filling me in on how you're doing, so I'm happy to be able to read your blog now to get more information.
All us Jermains are thinking and praying for you!! You are so strong and such an inspiration!!!
Best of luck and love,
Megan
"Trust in the Lord with all thine heart. Lean not unto thine own understanding. In all thy ways acknowledge Him and he will direct thy paths." Proverbs 3:5,6
May God richly bless you as you begin your journey. You will find strength in Christ.
"But they that wait upon the Lord shall renew their strength, they shall mount up with wings as eagles; they shall run and not be weary, and they shall walk and not faint."
Isaiah 40:31
Jessica this is our Christian Group on "Linked In" that are all praying for you. I've let him know how to donate (as he asks below)
Alan says...
From:
Alan Smith Date: August 20,
Hello Nancy Sustersic,
We live in Minnesota and deer ticks and lyme disease is very common up here, thankfully a round of antibiotics usually takes care of it if caught early enough.
Having two healthy 13 and 8 year old daughters, it deeply saddens me to see what Jessica is going through. Life is so fragile. Who really knows what God has planned for Jessica but I am certain that He is using her for something special.
Our family's home away from home is Sanibel, we usually spend about 3 weeks a year down there, if it weren't for family up here we would move there in an instant.
Please give me details about how I can help support Jessica financially.
Best wishes and thank you for getting involved trying to help Jessica.
Sincerely, Alan
Jessica,
Our family and many have you in their prayers today....The Lord and his heavenly host of angels are with you...We love you xoxoxoxo
Mark 11:22-24
"Have faith in God...Jesus answered, "I tell you the truth if anyone says to this mountain, 'Go throw yourself into the sea' and does not doubt in his heart but believes that what he says will happen,it will be done for him. "Therefore, I tell you,whatever you ask for in prayer, believe that you have received it and it will be yours."
Love & Blessings,
John, Angela & the boys....
Post a Comment