Hi to all,
Just wanted to ask everyone to please pray extra hard for Jessica today. Yesterday afternoon, Jessica started to have fever. It went as high as 104.5. Tests were taken and we await their results, but because Jessica's blood counts are very low and she is very susceptible to infection and because the fever was so high, she required a blood transfusion, as well as oxygen 24/7. Other tests are going to be performed to see what the cause of the infection could be. Please keep her in your prayers today!
Jesus, you are the ultimate healer. We ask that you watch over and protect Jessica today, as you have and continue to do. In Jesus' name we pray and ask and believe. Amen.
Thanks to all,
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!
23 comments:
Our thoughts and extra prayers are sent to Jessica, you and Nancy. xxoo Carol & Ray
dont worry jess, youll be fine.
youve made it through everything else with flying colors so i have no doubt that you will make it through this!! jesus will protect you as he always has.
love your sister,
katherine
We will continue to pray "extra" today and always. May God give you the strength you need for this journey. Love, Marianne & Rob
I know God will watch over you during this crisis Jessica. You are one of his most precious gifts and he would never let anything happen to you.We are praying as hard as we can for you, love, Bonnie
jessica I am keeping you in my prayers Jacquie
Jessica,
Time for you to literally just chill. Take off the sunglasses, remove the noise cancelling headphones & play some good music that will bring back another good memory. You can beat this, Jessica. RSD and Lyme can not hold you down. The infection is yet another hurdle that I know you will leap over ASAP.
You continue to be in my prayers.
Love and blessings,
Emily Wilford
Today was a special day for the Maitan family at church. Today my nephew's second set of beautiful girl twins were christened in the Presbytarian Church in Huntington. And today at that church when asked who needed prayers I called out"Jessica Stevens" So your prayers were answered that lots more prayers were coming. Wish I could do more.
Hoping you have a peaceful uneventful night. Hoping that both of you can sleep.
Linda in Saratoga
Hi Jessica,
Sending mighty prayers of healing to you. Our family will continue to pray that each day will bring restored health your way.
God Bless,
Linda (a fellow lyme patient)
Dear Jessica and Gina, Hang in there! We are praying for you and thinking about you day and night. God is with you in your darkest hours even when you can't feel Him. Your friends are surrounding you with prayer, which reflects and magnifies the light that shines from inside you. Our rosary group starts up again this Friday and we will be keeping you in our intentions. Praying for peace and rest for you- love always, Angel
Hi Jessica & Gina - you are in my prayers and thoughts every day - you're almost home..Just keep thinking positive thoughts which will bring you your positive outcome that you so righly deserve. My brother Vito wrote a book many many years ago called "Positive Thinking - The Key To Life" - and I believe that and I try to live that way too. In the book he used a phrase "it's only temporary, it won't last" - just remember "it's only temporary, it won't last".
Dear Jessica and Sarah, We're all praying so hard for you right now. Don't worry God will see you through these difficult times as before . Keep gathering all those precious memories as you continue your journey
to recovery . We all know that with your strength and determination that you will have overwhelming joy and happiness while in Mexico . Love and Prayers , Uncle Vinnie and Aunt Judy
To Jessica's mom:
My thoughts and prayers are with you and your precious daughter.
Jessica reminds me so much of my own daughter, who has also suffered with LD.
In looking at Jessica's pictures, she could have easily been friends with my daughter.
It has been bad for us, and we have hit rockbottom. But our experience pales in comparison to yours.
I don't know how you have been able to cope with this, much less write about it. You are an extraordinarily strong woman with a very strong daughter. I am in awe of you both and your family.
I will pray for Jessica, and pray for you and the rest of your family, as I'm sure many will.
God bless you all.
Our thoughts and Prayers are with you Jessica.
Love,
Bill and Marie in Dallas
El HaNe'eman- Faithful God, You are Lord over Jessica's life. I ask you to heal her for the glory of Your Kingdom and the comfort of Jessica and her family! In trust in Christ, Your name be praised always!
Hi Jessica you and your family do not know me, but I heard about your story on Lymenet and I want you to know that everyone is thinking of you and praying for you and your whole family.
Many of us have Lyme, but very few have to endure what you have had to. You are so strong and I know God will see you through this.
My whole family is praying for you and can't wait to see you up and running around again. You are a beautiful young lady and an inspiration to us all.
You don't even know how many people you are touching.
We love you and will pray for you every day,
Elizabeth from Chico, CA
Hi Jessica and Gina
Our thoughts and prayers are with you. Keep fighting Jessica it will be work it.
Love Ashley, Paula, Ray and Kevin
Dearest Jessica,
I will be sending prayers of healing for you......Crystal Ulmer
Jessica,
I found your blogspot link from lyme.net. I am so sorry for all you have suffered. I hope so much that this treatment is able to conquer the RSD and you will be able to pursue treatment for lyme again if needed (from what I understand this treatment is mainly for RSD?).
You are a beautiful young lady and I can see how many wonderful people love and care about you dearly, you have touched many lives amidst your suffering.
I have prayed for you and will continue to do so. God loves you so much more that any human being ever could and He desires the best for you. You will make a wonderful MD someday.
Sara and Jessica - Praying and thinking of you. You can lick this. Hang in there!
Love, Barbara
Dearest Jessica, Sara Gina and Nancy, Keep in the forefront of your thoughts that Miracles are just a moment away. My husband, friends and family continue to pray for you all daily. As the song says: Our God is an Awesome God - He is able to perform Miracles we cannot even imagine. Keep in mind that Miracles have no range of difficulty, God can and does do it all, and I believe He is with you every minute of every day - and YOUR Miracle is just a moment away. With much love and many prayers, Joanne Hartman
Extra prayers are going out for Jessica tonight. I will notify the prayer circle I belong to. Jesus, please watch over Jessica and heal her. Amen!
dear Jessica Dr. Guadalupe Zavala has explained me your condition but I know Jesus is seated next to you and close to all doctors, now Iam reading more about you. Iam sure you will be well enough to read all these messages and just remember these days. Believe me I pray for you, now I knew your condition. my name is Lupita Duran
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