To all our loved ones,
Our God is truly an awesome God and we thank him each day for all his blessings. Just as his road was not an easy one, yesterday Jessica's day began very different than the last. We were told that there would be difficult days ahead and that was evident yesterday. I won't go into details but once again keep the prayers and comments coming for Jessica. She is a fighter, we all know that, and she will make it through these difficult days.
All my love,
Jessica's Mom
P.S. We will hopefully be out of ICU tomorrow, if all goes well with Jessica. I wanted to personally thank "Froy" for all his help in ICU with my computer, without him I wouldn't be blogging. ( And Juan Carlos too) Also, special thanks to all the doctors & nurses down here, they have been so helpful and put up with me during these difficult days! Muchas Gracias y con mucho amor, ......la madre de Jessica.
Also, special thanks again to Dr. Cantu in helping me to realize that each day could be different than the last, and that this is what is to be expected in the recovery period following the coma.
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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!
16 comments:
gina
you busted my bubble about the computers! I couldn't believe how great you were doing and now you have given your secret away. But I am so proud of you to work on the computer and share with us each day. How can you possibly have time for computers and Jessica.
The Lord never had an easy road either. Think of all the people that distrusted Him and all the non perfect days that He had. Easter Sunday came and then there were the forty days before His Ascension.
Blessed Mother please continue to be at Gina's side as you were with your Son. Dear Lord, continue to carry Jessica and Gina through this difficult time.
Love
Linda Maitan
We are so happy to be hearing of this progress ! Love and prayers are going your way, from Dallas.
Love,
Bill and Marie
Dear Jessica, we are witnessed of the great care and outstanding stand by for you of your love ones, specially from your lovely mother, she is full of hope and enthusiasm. I meet your mother and relatives and friends at the ICU. You have earn a great respect for being a unique example for your fearless determination to follow the medical procedures for your cure, while sharing your experiences that will help others arround the world. We are praying to God and our Holy Mother of Guadalupe for your prompt recuperation, with our best warmest regards, Alvaro Arzamendi and Family
Gina and Jessica,
Glad to hear you're making progress along this tedious journey. Your faith and love will get you through. You're in our prayers daily.
Love, Chris & Phil Jermain
Dear Jessica and family,
I'm so sorry about the rough day! Just wanted to tell you that you are on my heart and in my prayers big time today.
blessings and painless hugs,
Rita MacDonald(friend of the Caparelli's & we have daughter with RSD)
Hi Gina, first of all I want to give thanks to you for trusting not only in me but in all the physicians, residents and nurses that are taking care of your beloved daughter, we know these are hard times but we are here all together to help her, I know that there's no greater love than the mother's love for a daughter, so, here we are Gina, you're not alone. I hope you'll get soon out of ICU.
Froylan,
Medicine Student, 6th year
PD. Gina, congratulions for being the mother you are.
Dear Sara..all I can say is that Jessica made it this far and she is going to make it all the way. Keep positive thoughts going all around her. She will pick up on your vibes. Only you know the connection that you have with each other. I pray that you stay strong and will keep Jessica in our prayers each day. We love and miss you both.
Our prayers and thoughts are with both of you on this journey. Gina, you are an incredible strength and Jessica, you are the most amazing young woman that I have ever seen. My daughter Kirsten is your age and she and I are following you through your journey. We are both so in awe of you and your family. God bless and guide you through to health and beyond Love, Bonnie
Gina, I'm sorry to hear it was a rough day. Know that God and all your family and friends are with you. Jess, keep fighting. Believe in your dreams and they may come true, Believe in yourself and they will.
Love, Marianne & Rob
Gina and Jessica
I'm sorry to hear that you are having a rough day.Tommorrow will hopefully be a much better day for you. You will continue to be in our prayers and thoughts. Keep up the faith and fight.
Love Paula, Ray,Ashley and Kevin
Jessica and Gina
I believe that you both are very strong person and God will help to the end of this tunnel for the best
and aech day will be better
Love cookie,candy&Cecilia
Dear Jessica, Hang in there honey! Keep the faith!! What an amazing person you are. You have made it through so many difficult times. You will make it through this too. We are all praying for you every day and following the blog for updates. I hope that tomorrow is a better day for you! Dear Gina, Hang in there! Your strength is helping Jessica be strong for herself. May the Lord renew your strength every day. I am praying for you every day as well, and for all the health care professionals that are taking care of Jessica. Sending lots of love and hugs, Angel
dear jessica and sarah,both your amazing strengths will get you through these difficult days.this is only another part of the unbelievable journey that you are both experiencing . keep the faith . better days are ahead. you are surrounded by incredible people and prayers that will help you through these days.I know there is nothing that you both cannot endure . love your BRO VINNIE
Strength and the love of Our Dear Lord be with you on this rocky road! The destination is worth the trip!!!!! We love you guys...Nancy
(and I'll be there soon!!!)
"Never look down to test the ground before taking your next step; only he who keeps his eye fixed on the far horizon will find the right road."
Dag Hammarskjold
1905-1961, Statesman and Secretary-General of U.N.
Dear Gina,
I don't know how you keep going - this has been a journey no one could have imagined for all of you, but most especially Jessica. May your stay in Mexico be the cure you have been hoping for these past 3 years.
Keeping you and Jessica in my thoughts and prayers - when she gets home, I will be happy to make pumpkin pie anytime she wants!
Anne K
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