Hi to all our family & friends & strangers we don't even know,
As I write to you today, I am sitting in a chair in the ICU of the hospital in Monterrey, Mexico. First, let me thank all of you for all the love and support you have shown us through your beautiful comments and prayers. It is @ 1:00 AM and I have just read them to her as she enters day 3 of the coma. I know she can hear me because she squeezes my hand! The ketamine coma is different that the regular coma in that patients have body movements and they can even open their eyes from time to time. I want everyone to know that just a few hours ago, Jessica was able to move her right foot and also jerk her left leg up - something
she hasn't been able to do for quite some time --- The doctors and I am so hopeful with these new signs of movement, more than words can even express!!! As I have said before, my darling Jessica is an amazing person and each day of this journey into "coma-land" has been an eye-opener for me. We are so hopeful, so very, very hopeful that in the days ahead when Jessica emerges from the coma, all indications will be positive and the pain with which she has been suffering will be just a bad memory. It will take time as Jessica's brain and central nervous system resets, and the road will be long and hard, but oh what a blessing to at least be able to take these steps and have this chance at a full recovery for Jessica!
Keep Jessica in your prayers and keep the comments coming as I will be reading them to her everyday. May God bless you all with good health because it is the one thing in life you can't put a price on.......
All my love, till tomorrow
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!
19 comments:
Gina,
Jessica's progress is very encouraging.
We pray and have hope that each day forward will present more new beginnings on her path to recovery to enjoying life.
Jessica's courage and desire to increase awareness of lyme desiase to help others is truely inspiring and helps us better appreciate how important our families health is.
Rest well.
Kathy, Julia, and Bill
Dearest Jessica and Sarah Gina, how encouraging these new signs are!!! We are so excited to be allowed to be part of your journey! Thank you for sharing...see you very soon dear friends!
Love Nancy & Joe
Sara, it's so good to read your update today...I copy and pass them on to the prayer chain for Jessica.
Tell Jessica to continue her journey with peace and courage that only comes from the Lord.
We are praying her up daily!!!
Keep the good news coming....
We love you
John, Angela & the boys
Continue the faith! What amazing news! I am in New York with my family and they are ALL praying for Jessica! Crystal
Dear Jessica and Sarah, Such good news! Our prayers are sending a multitude of flowers into the universe. The Blessed Mother sees this and is very pleased and She is responding with blessings, thru Jesus, and She is also directing the doctor's hands to continue his expertise and wisdom to this positive reaction to his therapy. God bless him and his team. God bless you, Jessica and Sarah,. and your family. With all our love, Aunt Rosie and Aunt Elena
Gina & Jessica,
What great news. You are in our thoughts and prayers.
Jeanie Moran
Dear Jess,
This is amazing. Keep fighting. You are an incredible person and I am so happy that you are responding positively to the treatment. Love you!!!!
XO,
Ashley
Jessica and Gina,
You have always and will always be in our daily thoughts and prayers. We are so hopeful for you and proud that you had the courage to take this amazing journey.
Wishing you love, peace and good health. May the days ahead continue to be positive and promising.
The Pratts
Hi Jessica and Mrs. Stevens,
How exciting it must have been to see Jessica do something she hasn't been able to do in years! We are rejoicing right along with you. We continue to pray for Jessica as she is in the coma as well as you Mrs. Stevens.
My Mom did want me to give you her email address however I only had Jessica's email address so I decided to post it here. Her email is sspengler5@comcast.net.
Also Jessica, I have to tell you I look forward with great anticipation for our first "real" conversation. Though we have had some WONDERFUL email conversations, I so look forward to the day I can speak with you in person. Well, via skype but it feels pretty close to in person! I still feel like I am on star trek every time I use it. Do you remember those big screens that they use to talk to each other from all over the universe? Yep, a lot like that. Well, that or the Jetsons. :) "Come in Mr. Spacely" George would say.
Anyway, we are all praying for you here. We love you guys.
Love In Christ,
Lindsay Spengler
What wonderful news! The guardian angels are watching over you both. I love what Aunt Rosie and Aunt Elena said - DITTO. ✙
Love you both!! Carol xxoo ♥♥
Dear Jessica,
This news is very encouraging and promising! You are so brave and I know you will get through this. I have complete faith in you.
Thanks to your mom for keeping all of us posted on your amazing progress.
I am praying for you always.
Love,
Marissa
Dear Jessica and Sara...We are overjoyed that Jessica has moved her limbs. Every minute of every day is one step closer to her recovery. I wish I were there to hold your hands but know that with each minute that goes by, I am with you both. Keep fighting through this Jess....we love you and want to see you soon. When you're feeling down just think of MOLLY break dancing and that will put a smile on your face. I remember the day that we chose her in the pet store. (We had to convince mom that it was a good idea. (We were always able to sway her.) One day we will look back and this long journey will be a distant memory. We love you, miss you,and pray for you each and every day.......XXXXXXXX
Dear Jessica,
I know that we have been unable to talk in a very long time but the positive impact you made on my life never left me. I continuously pray for you and hope so much that this will be the light that will help you start your journey down your renewed path. Keep those legs a kickin' and when you wake up you can go and kick all of those doctors that were idiots! haha. I love you and hope you are having 'sweet dreams'! :)
Love your Lymie friend,
Sarah Peterson.
Dear Jessica and Family
Jessica you are doing great, we are with you and you are in our hearts and in our prayers. Hold on!!!!!!!!!!!
We wish you all the best
Pili and Anthon
Mexico
Jessica and Gina,
We are so encouraged! Keep fighting Jessica. A big hug and kiss to your Mom. Jess is pulling through with all your positive energy! Love to all, Marianne
Dear Sarah and Jessica, You are on our minds everyday. We hope and pray you have reached a turning point and God will keep helping you to get better,so that you and your family can resume a normal life. May God give you and your mother strength to carry on.
May God give the doctors the skills to continue the good work amd may you get the miracle we are all praying for. Get well soon and get home! Love and kisses, Aunt Mary and Uncle Johnny and God be with you and your family.
dear jessica and sarah,this is the most wonderful news . you are in our prayers and on our minds every minute of every day.may each and every minute of each and every day continue to bring more signs of improvement . amazing . keep up the faith as you continue asleep through your journey .love uncle vinnie and aunt judy and your Grandma Gelo who is so excited about this . Grandma really wishes she could write in her own words how she feels right now . God bless the Stevens Family
I've been praying and praying for Jessie so very hard. The news today was absolutely fastastic to read and I know you both are blessed. We don't know each other except thru a friend of mine. Miracles can and do happen. God, please wash over Jessie with the healing light and make her whole again.
A friend of Regina's
Its great to hear you are doing well! Not a day goes by that Eric and I don't think about you guys and cant wait to see you when you get back. keep up the great progress and we will see you soon!!! take care Jessica!!!
Jason
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