Hello to All,
To view Jessica on Fox TV, Click on Link Below:
http://www.youtube.com/watch?v=PW_vstm0bS8
The storms have finally ended and the beautiful Monterrey sun has reappeared over the Sierra de La Silla mountains once again!
Jessica has been reconnecting with her sister Michelle this past week. It is so nice to hear them together again talking like only sisters can! For all of us who have sisters and/or brothers, we know the special connection that exists - it is like no other!
Jessica has been responding to the antibiotics and the fevers have lessened. Dr. Dillman (aka Dr."Febricula") wants her to finish the course of the antibiotics. All cultures came back negative and so it is believed that it was a flare-up of her RSD - as a few of the lesions have reappeared on her right arm. For Jessica, the ketamine is a necessary component to keeping the lesions at bay and also the pain some what controlled.
Since being in the apartment, I have had time to reflect on the time that Jessica and I spent at the Hospital San Jose Tec. For the 10 months that we were there, so many things happened and so many stories need to be told. My plan is to write a book about this journey. In fact I have already begun to do so! The title will be "It's A Long Story....But....." and each chapter will begin with the "But.....". My hope is not only to tell Jessica's story, but to also raise awareness for RSD - a disease that is so misunderstood and so life-changing; and also for Lyme - a disease that people need to be so careful of due to its' devastating effects as well! I will keep you all posted on the progress I make with the book. Many of the blog postings will be a part of the book - as well as many of the comments. Who knows - maybe it will be a bestseller??? Only God knows the answer to that one!
The other day we had our first visit from a fellow coma patient - Blair. He has become very special to us - he is like family. He came by before his trip back home to Canada. He and his companion Susie brought over some special gifts for Jessica and I. Jessica received a hug-bear and I received a beautiful Beatles painting to hang on our wall in the apartment. Thanks Blair for the presents, but more importantly for the visit and for all your love!
Dr. Cantu returns from vacation this Saturday. It will be good to have him back and we hope he had a nice vacation with his family --- he deserves it!
Thank you all for the compassion that you have shown to Jessica and to our family. May God bless you all with good health --- for it is something that you cannot buy and so very important --- besides our faith in God. It is with God that we all find the strength to carry on.....
Psalm 84:11&12
"For the Lord God is a sun and a shield; the Lord bestows favor and honor; no good thing does he withhold from those whose walk is blameless. O Lord Almighty, blessed is the man who trusts in you."
Psalm 37:3-5
"Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in Him and He will do this for you."
Peace and love always,
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!
11 comments:
It is so nice to have all the girls together. It warms my heart to think of you all there together, the girls talking and giggling (brings joy to any mother's heart)! :D
Wonderful to hear that Jessica is responding to the antibiotics. We will pray that the ketamine will get rid of those lesions once and for all!
Hope you enjoy the beautiful weather and that you will continue to see daily improvements in Jessica's health!
I bet Michelle and Katherine can see HUGE improvements since they last visited with Jessica!
With love & prayers,
The Turners
Sarah and Jessica,
Thanks for posting again as we pray for you both, and for your family- and now Michelle as she is visiting. How wonderful that sisters can be together!
Thankful for all you wrote about, and we will continue to pray for God's healing touch, His strength, and His love to fill you.
Kathy and Harv
How wonderful to have the sun back! Michelle can spend some lazy days by the pool and maybe even by the end of the summer, we will figure out a way to get Jess to dip a toe in! The next milestone!
I pray that Jessica's lesions all go away, that Dr Cantu returns with new vigour and creativity in his efforts to restore your family.
I pray for all of you that you may feel God's love surrounding you both in the people you encournter in your day-to-day and in His Spirit. May you feel a renewed energy, a strong sense of recommitment to the battle and a true knowledge that you are loved!
I love the idea of the book. Let me know if I can help at all.
Talk to you soon
-Fern
Hello Sarah, Jessica & Michelle,
It's great news that Jessica is responding to the antibiotics, she is such an amazing & strong young lady. Having the sun shine is good for the soul and reminds us that storms in our lives will pass and there are brighter days ahead. We wish you continued strength, courage and feelings of hope for a future with Jessica returning home painfree. Thank God Dr. Cantu is returning tomorrow as I know just having him nearby gives all of you comfort, and yet, he does need to recharge his batteries!!! Stay well, stay positive, remain hopeful and know you are always in our hearts and prayers.
Love,
Rosemary & John
Love and Prayers -the answer to all.
Enjoy the blessed, wonderful GIRL days. Each moment with them is God's gift.
Saturday afternoon Mass, we all prayed for you.
love and peace,
Linda in Saratoga
I have to tell eveyone that the highlight of my trip to Monterrey was NOT my 7 days in the Hospital! It was my visit with Jessica and Sarah and i was lucky enough to meet Jessica's Dad and sister! They are a very wonderful and loving family, who are blessed with kindness and love to others. I feel very blessed to know them and feel a strong bond to them. There is not a day that goes by that they are not on my mind. I had a booster here in Canada on Friday and the last thing i can remember before i went under was i wonder if Jess is getting a booster now, maybe i will meet her in LALA land. I know you probably think that its crazy, but i don't, we in my mind have become close friends and the power of God can make anything possible. Jessica and Sarah, i miss you guys and hope to see you again in September when i come back for more treatment. I will Skype you this week to catch up and find out how you have been doing. May God take care of you.Jess i hope your sores do not get bad for you, i am thinking of you.....
Love you,
Blair
Hi all. It is Thurs 7/22. I know you are all wonderful prayer people. I need to find God's solution to a out of the blue situation. One short prayer will help.
thanks,
Linda in Saratoga
I'm so glad that Jessica and Michelle have renewed their bond. Sisters always need each other. Hi to all and God Bless. love, Bonnie Oh, by the way, how's the leak in the ceiling???? fixed I hope!
From the mom of a 13 year old with RSD, I encourage you to please continue writing the book!! I am considering writing about my daughter's RSD journey also. You have been such an amazing encouragement to me!
Jessica, you and your family are always in my prayers.
Many blessings.
Hi to all the Stevens girls down there in Monterrey! I am so glad that Jess is continuing to take the small steps necessary for healing. It's also great that Dr. Cantu is back! Rainbows bring such beauty into the world... I can't imagine what it looked like to have the full rainbow encircling the mountain! I love rainbows too, and the visual of that made me smile. It occurred to me today, Gina, that you build a community wherever you are. Whether it's here in GC, in a hospital setting, or in an apartment in another country, you make a beautiful life for yourself and those around you with your love and caring. We can all learn a lot from your approach to life and to difficulties. I have to think that the faith, strength, determination, perseverance, and humor that you and everyone in your family have shown throughout this journey has got to be the way God hopes everyone in this world will face serious challenges in their lives. Hang in there!!! Love always, Angel xoxoxoxoxoxoxoxo
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