Dear Family & Friends,
To view Jessica on Fox TV, Click on Link Below:
http://www.youtube.com/watch?v=PW_vstm0bS8
One of the great themes of Christianity is hope - triumphant hope. Not just hope as in a distant dream, but triumphant hope - the kind of hope where all things end right. It is this hope that brought us here to Mexico in the first place. The hope of a better life for Jessica. In the midst of all the struggles and challenges, all the storms and sufferings, we can advance our thoughts beyond today and see relief.....see the triumph.....see the victory! Because --- in the end, God does indeed win! Jessica's journey of hope will ultimately prevail!
Please continue to pray for Jessica. These past few weeks have definitely been a struggle for her, physically and emotionally. Please pray for the fevers and infections to stay at bay and with that the pain to be lessened. Please pray for her to continue taking the "small steps" of hope towards the ultimate victory. As I have said before, our journey is a day to day one. We know that with God all things are possible and in life, you have to realize that the things that are worth waiting for take time to reveal themselves, but they will - that is our hope! We have seen the progress made here, we have seen the miracles unfold. We know that it took time for her to get ill - it will take time for her to get better. God is in control!
As Linda from Indiana wrote in one of the comments on the blog for Jessica's birthday -
"I too have RSD/CRPS which has spread full body. While helping my doctor research the timing of ketamine boosters for my outpatient protocol, I came across your story. It came at a point where depression had taken hold and your faith, as well as your mother's, turned my eyes back to Jesus.
No matter how much physical healing I ultimately get, I praise Him for the spiritual healing going on in me each day despite the pain. To see someone like you also in so much pain who has touched so many people, to me this is a miracle...like your eyesight, your movement in your legs, your healed sores, your medical team in the right place at the right time, etc.
And I KNOW, as your mother has written, that there is much more in store for you, and me, and all the others suffering from this disease." ... Linda, from Indiana
Thank you Linda for those beautiful words for Jessica. They meant so much to her and me as well! You are a stranger that has now become a friend. May Jesus heal you as well!
In His Love, always,
Sarah Gina (Jessica's Mom)*
"For you alone have been my hope, my Lord, my confidence since my youth" Psalm 71:5
"I am the Lord your God, who upholds your right hand, who says to you, "Do not fear, for I will help you". Isaiah 41:13
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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!
11 comments:
The other night we started a Bible study in my home. It is called "if you want to walk on water, you have to get out of the boat". It made me think of my story as well as yours, Jessica.
I am certain you recall the story so won't type it here. In the short video, the pastor speaks about the fact that despite the fears, Peter took the leap of faith and got out of the boat. It was in being brave enough and trusting Jesus enough that he was able to walk on water! In a storm!! Something the other 11 never got to experience. It was only when he took his eyes off Jesus and took in his surroundings that fear took root and he began to sink. In the Bible it says that Jesus reached out his hand and saved him. Just one hand! That night, Peter was able to not only experience but feel the love of Jesus. As I watched and thought later about it, I realized that it is in being brave enough to take those first steps into the unknown, despite the storm that encircles us, that we get to know Jesus and God in a whole new light. We experience much more poignantly his love, compassion and STRENGTH! Jessica, you and I, we got out of the boat! We are get to experience the euphoria and the fear that go with this act of courage. Keep going towards the goal and don't take your eyes off the one who said "come".
You are right where you need to be right now and I believe that God has been cheering for you for keeping your eyes on the prize this long. Do not let fears overtake you. You are always in my heart and in my prayers. From what I can see, your family has also gotten out of the boat and you are definitely not alone!
Just thought I would share the thoughts I had around this study and how it brought me to pray for you and for the struggles of all the coma patients and those sent to care for us.
Hope today is a good day
Psalm 147:3
3 He heals the brokenhearted
and binds up their wounds.
It is when we are at our weakest do we see His strength.
We will keep praying for the small steps forward, patience and strength to get you both through each and every day.
With love & prayers,
The Turners
Here is a catchy tune I thought might brightened up your day :)
http://www.youtube.com/watch?v=1oNcmrhoZvI
This little light of mine, I'm gonna let it shine!
Dear Jessica and Mrs. Stevens,
I thought that it was about time I write something, as I have been following your blog since its inception. My name is Debbie, and I am Coma patient #11. Mrs. Stevens, I am in awe of you. You epitomize what the word Mother means, and Jessica, you continue to be brave. You are where you need to be. Dr. Cantu is a man of God and one devoted to his patients like no other physician I have met other than Dr. Schwartzman.
Unfortunately, my RSD returned rather quickly, and it returned more destructive than prior to my coma. Jessica, I understand the eating issues as well as the trouble seeing. RSD can ruin lives, families, and dreams; however, like you, I refuse to allow it to take me, and it with the support of family and the belief in God, the Father, that makes all hope possible. In Jeremiah 17:7-8, Blessed is the man who trusts in the Lord...
He will be like a tree planted by water that sends out its roots by the stream. It does not fear when
the heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit. In other words, if the roots are deep and strong, the tree needn't worry about the wind. God shields, and so do Moms! Your faith is as solid as that tree; neither drought nor wind will "shake" it, and I know the same is true of you.
May The Lord keep cradling you in his arms, and like the tree in the face of adversity, when the heat comes, stand tall, even if you are lying in a hospital bed on the eighth floor of San Jose Hospital.
Many Blessings!
Debbie Caloutas
Dearest Jessica and Gina, I am thinking of you today and hoping that this is a better day for you. Linda from Indiana's story is a beautiful one, full of real true feelings and the challenges of faith met bravely and squarely. Linda, Fern and Debbie, thank you for bravely sharing your stories with all of us. It is in the sharing of personal stories that we discover how interconnected we really are, and how much we all can help each other. It also gives us new heroes to look up to in our own lives. I will keep you all in my prayers. Hang in there!! Love, Angel
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