Monday, August 31, 2009

A Message from Your Sister Katherine

The following is a message to Jessica from her sister Katherine who just started her first year at college. When you have a daughter that is chronically ill, you miss alot of "firsts". It is our hope that after Jessica is well from this treatment, our family can once again experience all those "firsts" together again!!!

Jessica You're Back

To my sister Jessica,

Jessica, all my life you showed me the way. It started off with things that were so easy for you but so big for me. Things like looking both ways before crossing the street, and teaching me how to "pump" so that I could swing on the swing set. I absolutely adored you in every way possible. I wanted to be just like you and always make you proud, in hopes that you would let me feel "cool" and hangout with you and your older friends haha. (well, that didn't always work out so well, but you know how those things usually go!) To me, you have always been this big, bright pillar of light. A light that was burning so bright inside of you that everyone who came in contact with you couldn't help but notice it and be in awe of it. You always had that "something" about you.

Then something horrible happened. You became ill and couldn't do much. No one knew what was wrong, it was one big horrifying mystery. To our horror, you had lyme disease and RSD, and they both slowly started to take over your life. You got sicker and sicker and doctors became more & more concerned. Everyone around you tried to think of things, anything, to bring you back. All of us, in our own great health, thought of solutions but none stuck. Jessica, even when you were the one who couldn't do half the things that we could physically do, somehow you managed to find all these solutions and even shock some of your doctors with your research and ideas! Although, on the outside you were no longer the person you had once been, inside however, that light inside of you was still burning bright. In fact, it was burning brighter than ever. Whenever I would go into your dark room, I always saw the light! Jessica, YOU are the one that kept that light burning so bright! There were so many times when you could have easily turned it off and given up, but you didn't! That light inside of you is the light of hope, the light of bravery, the light of determination, the light of love and of course the light of Jesus Christ, your Lord and savior.

Jessica, when you were put into the ketamine coma, I believe 100% that you did not just lay in a bed and sleep. I believe that God picked you up, held you in his arms, and breathed all of his might and love into you, so that when he layed you back down into your bed, you would wake up renewed in only a way that God almighty could ever do!

Now, I will finally have my sister back! But this time, instead of you showing me the ropes, I am going to show you! I can't wait for you to be able to visit me in college! I will take you to some great parties and we will have the time of our lives together!

I love you so much - more than you could ever possibly imagine. I know you will make it!!! And I can't wait to go for walks with you and talk about everything we haven't been able to talk about for so long!

Love always, your sister

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Nancy said...

Dearest Katherine...Jessica is so blessed to have you as a sister. Your caring and love and understanding is so deep for somone so young. Your Mom and Dad and Michelle are so lucky to have to to call family. I see you two hanging out at the parties and can hear your laughter and joy.

You've touched my heart in ways that I will never forget. You truly are a very special loving sister, and daughter and friend!

With Love,
Nancy & Joe

Love from Aunt Carol said...

Dear Jessica....Your sister Katherine has expressed all that she feels for you. You are both such beautiful and intelligent women. (Michelle is also just aS BEAUTIFUL and intelligent.) I hope that you can hear the words of your sister and everyone else that loves you. We are all cheering for you. We want you back home with us. With all of our love, support and prayers. Love to my sister Sara who is truly amazing. Anyone would be so propud to call you sister...I am truly blessed....Love your sister Carol

Anonymous said...

Dear Jessica I Know how yuor sister Katherin (Blondy )this is the way we call her; she love you and she have beautyfull HEART
Please get better they both need you
love Cecilia

Anonymous said...

Dear Katherine,

What a beautiful letter you wrote to Jessica. Having the love of her family and God is what is getting her through this ordeal none of us can imagine. I keep all of you in my prayers,

Anne Kinn

Angel said...

Dear Katherine,
I loved reading the letter that you wrote to Jessica. What I loved the most is that, knowing you all these years, I know you meant every word from the bottom of your heart. You have written something that can be very healing for Jessica. Hearing how much someone close loves you, even if you know it already, is so good for the soul. I wish you all the best in college, if you ever need anything please call me. I keep you, Jessica, your mom, your dad, and Michelle in my prayers every day. You have a beautiful soul and a way about you that draws people to you. Your mom and dad can be so proud of how all three of their daughters have grown- so strong in their love and strong in their faith! Hang in there! I love you all- Angel

Love from Grandma said...

A message from Grandma....
Katherine wrote a beautiful letter to her sister. Thank you for calling me on my birthday. There is really nothing to celebrate without you both here. We pray for Jessicas speady recovery. Then we can all be together.
Love Akways...Mom

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!