Hi to All,
I am writing to you all today with a special request from Jessica herself. She asks that you all pray extra hard today so that she can recapture the bits and pieces or "small packages" of memory that have not yet returned to her! Apparently, when you emerge from the ketamine coma, it may take time to remember who you are, where you are, what you did, and all the different events of your life. These "small packages" are slowly coming back to her on a daily basis, and the doctors promised Jessica that her memory will fully return, we just don't have a timetable as to when this will happen. In her own words, she feels like she is in a "black hole". So please pray for her again today. Pray a special prayer for her complete memory to return. We ask this is Jesus' name, Amen.
Special thanks go out to Emily, who also underwent the coma at the same time as Jessica. She came to visit Jessica in her room to give her words of encouragement. Emily is able to walk with help from her family, as her initial RSD was in her wrist and upper body and not in her legs. Jessica's case is different in that her initial RSD began in her right leg and her lower body. Our hope is that one day Jessica will be able to fully move her legs again and walk down the halls of the hospital!
Also, special thanks to Rick Brown who has been here with his son Justin for the past 7 weeks. He has been so helpful in showing Nancy how to navigate Monterrey to get us the things that we need, as I won't leave Jessica's room until she is aware of her surroundings and her memory is fully back.
Love to all,
Jessica's Mom
"No eye has seen,
No ear has heard,
No man can know,
Those things that God has prepared
for those that love him".
I Corinthians Chap 2 V. 9-11
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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!
15 comments:
Jessica
I pray that you remember all the good stuff. Try to remember the Maitan's boats. Remember the little boat. We sang We're cold when the sun decided to go in. That was near Chris and Phil's house.
When we visited you at the beach house in the big boat. remember when the ice cream place was closed so we had to raid all the cabinents on the boat. We were a very hungry crowd.
Maybe you can remember Barbara. She had so much fun sitting for you. She has a beautiful little girl who will be three this October. You never met Julia but you are welcome to come to Saratoga and visit us.
There are lots of great memories.
More importantly we pray for you to make new memories.
love to you and your family.
Saratoga Linda
Thanks for writing each day. I look forward to hearing the progress.
Thanks to our dear prayer friends...and especially Carol Biron who is celebrating her birthday today!! HBD Carol!! Jessica said, "It's my birthday too..happy birthday to me."
God love Jessica for her beautiful spirit and thoughts. She is the bravest person I've ever met. Praise be to Our Dear Lord!!!
Love Nancy (the other person in the room, as Jessica calls me. on that note...The person she remembers the most is Nita...Jessica is always talking about Nita. They will always share a special place in each others hearts for the journey they shared)
We are thinking of you and praying for you, Jessica. We are sending you wishes from Pennsylvania. Hoping to play pong-pong with you again in the near future! We look forward to more updates from your Mom and Nancy. God bless you and the Stevens family.
Love,
Bill, Carol, and Ray
Jessica,
I have been praying for you everyday and will add an extra one today that your memory comes back full and vivid!!
You are a strong person!!!
Julie S.
Jessica, this is my favorite quote..... Draw not the curtains lest you should miss some of the glory of the sky. I believe it means look forward and never give up. God bless and guide you to your memories and your health. Love, Bonnie
Dear Jessica....Making it through the coma was a miracle. Your memory will slowly emerge and you will be fine. Keep fighting each day. Listen to moms words of encouragement. You two have a special bond. I know that soon you will look into her eyes and say "Hi Mom". It will happen. We love you both and pray for you always....Love///// Aunt Carol
Dearest Jessica, every day brings you closer to home , loved ones and friends .we love you ,uncle Vinnie and aunt Judy
Hi Jessica and Mrs Stevens,
I just caught up with your blog and apologize I have been MIA. My computer has been in the shop for a while so I haven't had internet access. But I do have to tell you, Mom and I talk about you (and certainly pray for you) every day.
Jessica, the journey was definitely long and very difficult for me as well. I know your Mom mentioned that in some ways these days are more difficult than before the coma. I know that statement is hard for some to imagine, but it was very true for me as well. Jessica, you are a fighter. That is what has gotten you this far and will see you through this. I know God's timing was in question many times for us. I know the days were terribly long and the nights were even longer. During that time, we believed and KNEW that God's timing, though not ours, is perfect but very hard to understand, but you know, It is funny and my encouragement to you is this: looking back on these times, some of the times God felt the most absent, the most distant and times that were most difficult, were some of the days that we defining moments in my recovery. Now it is amazing to see how God redeemed such desperate, and tragic times for not only my good and His glory, but ultimately to my recovery. Something that only our God could do, you know?
Well, I love you guys and will be praying for you. If you need anything at all or would like to talk with either my Mom or I, please feel free to email us or we can set up a time on skype.
Love In Christ,
Our Healer,
Lindsay Spengler
Jessica,
You remember our little puppy that Nancy had over your house? Those memories with our animals are so special. They miss you and want to see you well.
Jessica, My name is Joanne and I am Nancy's sister. Nancy told me about your journey and my husband Mike and I have been reading your Mom's blogs and are so inspired by your strength. We pray every day for your health to return and that the Lord bless you richly. You have endured this illness and have never given up or given in to its darkness. We have all our friends and all of my bible study group praying for your full recovery and that you will soon be able to smile with the sun and God's Light shining on your sweet face. With God's Grace and many blessings on you always.
Love, Mike and Joanne
We will be praying for your family. The black hole is a scary place to be. Music may sooth and help her regain some memories. We are happy to hear she is improving daily. It is a slow process but as long as you are moving forward.
With love & prayers,
The Turners
You are alway in our prayers and on our minds..your strength and courage is truly amazing! This goes to Mom as well! Special prayers for a full memory recovery. A little each day and all will come together.
Hi Jessica! I always smile when I think of Molly & Spike's "wedding". Molly in her wedding dress and Spike in his tux. Your Dad was the minister, Pebbles was the maid of honor, Sabrina a bridesmaid. The whole ceremony was hilarious. You and your family went onto Hershey, Pa.,and Molly and Spike spent their honeymoon with me and Grandma!! 60 days later, I came to L.I. and helped you deliver 4 puppies. We all had such a great time. Those were the days!! I Love you, Aunt Ro
Hi Jessica,
It's been a very long time since we have seen/talked to you or your family. Laura (Norcini) and I knew that you were not well but had no idea of the true seriousness of it. I think many of your old classmates from Garden City are only vaguely aware of what you have been going through. We are now following your progress and praying for you and your mom (Gina-- only remember you as Gina, not Sara!).
One memory from way back when comes to mind---Girl Scout trip to a play in the city (can't remember the play but remember meeting and taking pictures under the awning in your backyard on Huntington Road). Also remember going to ESPN zone for dinner and your mom (pls don't hate me Gina) stating very emphatically that she was only ordering a small dinner because her real interest was 2 desserts! I thought that was hysterical and what every mom would really want to do!. Also remember a car full of girls singing songs from the opera "Rigoletto" (La Dona e mobile). That was the 5th grade opera performed at Stewart School that year. I think that was one of the first times you were sick and had to be home schooled for a period of time. Who knew ...
Well, Jessica-- you have had a totally different experience than many of your peers. We are optimistic that you will play catch up in your 20's. You are more than entitled to a few crazy experiences.
Finally, (I am sorry for monopolizing this blog) but if there ever was a situation where the expression "love conquers all" could come into play, your life embodies it. We are deeply moved by the incredible bond you have with your family and God.
Be well,
Noreen and Laura Norcini
Hold on to that verse! Thinking of you, Crystal Ulmer
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