Tuesday, September 1, 2009

A Message From Your Sister Michelle

Hi to All our Family & Friends,

Just wanted everyone to know that the past few days have been rough for Jessica as she is experiencing some of the side effects of the ketamine. These will pass and are to be expected but at the same time hard to go through for Jessica. We are optimistic and remain hopeful in the knowledge that with each and every day, we are taking the tiny steps forward that are necessary for Jessica to regain her life. May God bless you all.
Also, we are grateful to our dear friend Nancy who arrives today to help us transition from the ICU to the 8th floor of the hospital.

Love to all,
Sarah Gina (Jessica's Mom)

P.S. Happy 86th Birthday to my Mom & Jessica's Nanny Yum-Yum
We love you & Miss you

To My Sister Jessica (aka - Wessie),

Dear Wessie,
I love you so much! I remember making the scary face at Katherine and having so many good times. Then I remember moving to Florida. We had such a good time in the hot sun, but then tragedy struck! I didn't know how to deal with the situation at the time because I was only nine, so I just kept saying it's nothing, it's nothing......but then it got worse and the doctors didn't know what to do. Watching our whole family get torn apart by a tick, a stupid little tick! And then you got RSD and the pain was all over your body.
I can't seem to remember you really walking, only glimpses in memories and videos. Now I believe that I will be able to see you walk again! I remember you and me being best buds and then it vanished.
I love you Wessie and I'm a big sap because I can't believe that I'm crying as I am writing this letter to you! I am finally going to have my "Wessie" back - my beloved Wessie back! I have always looked up to you. I know that people say that the love of your life is the person that you marry, but, Wessie, You are the love of my life! I love you more than anything. I never wanted anything bad to happen to you! I believe you are the strongest person I know and when I have a baby I am going to name it after you, because maybe, just maybe, it will be as strong as you. You were always strong, smart and gorgeous. I Love you and am so glad that my Wessie is coming back. I want my baby back, baby back ribs - LOL - remember that!
Well, I love you Big Wessie!

Love, Your Little Wessie Michelle

*** To post a comment - CLICK on comments below***


Anonymous said...

Good Morning.
I look forward to hearing about Jessica's progress each day. I know it takes time and effort to write each day. Thank you.
My prayers are the Stevens Family and Relatives. Your love, prayers and support has shown what real families are. May my prayers for you today make the day more peaceful and sunny.
Love from Linda in Saratoga

Anonymous said...

Sara and Jessica - My prayers are with you in this difficult time. I hope there will soon be news posted by you Jessica that you are again feeling well and headed home. Be strong. Love, Barbara (Aunt Carol's friend) just in case there are other Barbara's.

Anonymous said...

My thoughts and prayers are with you! Please keep us updated, my whole family is praying for you:)
Crystal Ulmer, RN

Aunt Carol said...

I wrote a message from Mom on the last entry after Katherines letter. She thanks you for calling her on her birthday and that she misses you both so much.
We know that Jessica will come through this just fine. Jessica is a strong young lady who won't give up. We love you both. All of our love..Aunt Carol

Aunt Carol said...

Dear Jessica and Sara.. With each day will come a new beginning. Every hour that passes brings Jessica closer to home. We pray for all the doctors,nurses andaides that have helped our family so far from home. Thank you to Nancy who is there now, with you and Jessica. Keep up the positive vibes all around Jessica. To my sister who I miss so much . . . I love you and hope that your return is sooner than later. (My port removal is done..everything is fine.) Love you both...Your sister Carol

Angel said...

Dear Michelle, I loved your letter to Jessica. You are a very special sister for Jessica and Katherine, and a very special daughter to your mom and dad. Keep being strong for Jessica and praying for her. Your wonderful memories will make Jessica feel so good when your mom reads her your letter! That feeling is an amazing gift from you. If you are a big sap, then I'm one too because I cried when I read your letter! :) Hang in there!!! Love, Angel
p.s. Happy birthday Grandma!!

Anonymous said...

Jessica you probably don't remember us but we met you and your beautiful family when we all made that move to Naples Florida and Indigo Lakes. Your neighbor and my mutual friend Carol Biron introduced us all. I remember sitting on your Lanai and eating Mango Salsa. You and my daughter Kristin talked about what it was going to be like at Gulf Coast High School. You and Kristin kept in touch at Gulf Coast. I had a few gatherings with your Mom and we always had fun. Those were the memories that I hold onto and have been in constant touch with Carol so that she could keep me up to date on your status. Your Mom is a true angel and I wouldn't have expected anything less from her. She was a true friend and I look forward to sharing those happy times with you and your wonderful family again one day soon in Naples Florida. To Sara Gina you are the best mom anyone could ask for and I know that Jessica will become that Doctor that you spoke about in your blogg. She is amazing and you are also. I pray for you and Jessica everyday and also for your wonderful family that you will look back on this and know that it was your stamina and Jessica's will to survive. Keep on Blogging it keeps us all hoping and Praying..Doreen

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 ill

The 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 lesions

Jessica'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 camp

Four 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 rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During 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. Kirkpatrick

Upon 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!