As the day is finally drawing near, my mind is racing and my heart is pounding with so many emotions........Today Jessica's Dad wrote her a beautiful note for me to read to her. We laughed about some funny stories he recounted and we cried at how the past three years have been such a journey.
Theodore Roosevelt once wrote:
'BELIEVE YOU CAN AND YOU'RE HALFWAY THERE'
We believe that with our deep faith in God and his guiding ways with the doctors, Jessica will make it thru, healed and restored.
Love, Sarah Gina (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!
7 comments:
Dear Mrs. Stevens,
I just wanted to let you know that I have been thinking about Jessica nonstop over the past few days. I've known she has been sick for a while and always asked Cecilia at the salon if there had been any improvements in her health. Since Katherine sent out that letter on facebook I have been praying for Jessica and I am hoping that this procedure is successful for her and that she can being her recovery.
I can remember playing with Jessica when we were little and you guys lived down the block from us and I cant believe that she has gotten so sick that she cant even get out of her bed.
Please let Jessica know that I am thinking about her and that I know she is an amazing girl.
Your whole family is in my prayers.
love,
Stephanie Auer
Jessica,
We think about you everyday and know that you will be back in Florida lounging in the sun very soon! Sophia always asks about her cousins and she says that "cheesus" (she can't quite pronounce jesus) makes everybody better... We love you soooo much and can't wait to see all of you again! We hope that your time in Mexico is filled with much needed rest and recovery.
Love, JoAnna, Frank, and Sophia-Bella
Jessica, your story has touched me in so many ways......I have been a nurse for about 6 years and my eyes have see alot, however, I am truly touched by your determination and strength! 1 Corinthians 2:9 "no eyes have seen, no ear has heard, and no mind has imagined what God has prepared for those who love Him." Jessica, the BEST is yet to come. Hang in there......Crystal Ulmer
tO MY BABY SISTER...Your strength and courage has helped Jessica for the past three years. No one can know what you've been through together. Know that you are both in my heart each day. I am a phone call away. I will come to Mexico if you need me to. Know that I love you both...Love your sister...Carol
Fly Fast
Fly Strong...
Recovery is near...and just
Across the border!!!
Thanks to your wonderful Dr.Kirkpatrick!!
In God's strong/loving hands!
Love and blessing,
Nancy & "Team Jessica" your prayer warriors
We are all thinking of you and praying for Jessica's full relief from her ordeal. Don't hesitate to let us know if we can be of help with Catherine's move to Iona, rides home, etc. Amy & Neil McGoldrick and family
Jessica, your story has touched me in so many ways......I have been a nurse for about 6 years and my eyes have see alot, however, I am truly touched by your determination and strength! 1 Corinthians 2:9 "no eyes have seen, no ear has heard, and no mind has imagined what God has prepared for those who love Him." Jessica, the BEST is yet to come. Hang in there......Crystal Ulmer
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