Hello to all our family & friends,
Yesterday Jessica's Dad called from N.Y. to say that a Fed-Ex package had arrived for her. In the package was the following hand-written letter from Dr. "Patch" Adams, along with two specially autographed books for her. We are so honored to share it with all of you:
(You can click on the letter to enlarge it)
I want to say that we were truly very honored to meet Dr. Patch Adams and for the time that he spent talking and laughing with Jessica. We will never forget it. He is an incredible doctor and an amazing man. We will also never forget when Dr. Cantu and Dr. Adams met and their wonderful "funny" picture together! May we all try to find humor and laughter in our everyday lives, even when you are faced with struggles, challenges and pain on a daily basis. Dr. Hunter "Patch" Adams has said many times that according to medical research it is good for you to "be joyful". That "laughter" is truly the best medicine!
As Dr. "Patch" Adams travels the world, lecturing and meeting patients bedside in his "clown" attire, he once said this: "We wanted to make medicine human. When are we most human???
In Friendship................. (Dr. Patch Adams)
In friendship and Love, always,
Sarah Gina & Jessica*
xoxo
Update on Jessica & Hospital San Jose:
Today Jessica will receive a booster to help her with the pain that she has been experiencing. Also, yesterday we said goodbye once again to our dear friends Fern and Cindy as they leave to go back home to Canada. Fern was here for her boosters. We also said goodbye to Elena & Isaac and their daughter Jessica. Elena was also here for a week of boosters and I have to say that they are a very special family. I presented Elena with her very own homemade "coma bear". Hers had a "heart" theme as she collects hearts and also because it was made from the "heart" for someone who is battling two foes: RSD and cancer.
Please pray for these wonderful people that we have come to know! I also heard from John & Rosemary Roach, who sent such a heartfelt message to Jessica - one that she will treasure always! Also, pray for Devon & Cathy Emmanuel who are returning as well for boosters. Devon was Jessica's "coma buddy" and so it will be so nice to see them again!
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"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." ~Jeremiah 29:11~
Wednesday, April 14, 2010
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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.
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 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.
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.
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.
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!
51 comments:
Dr. Adams was right!
A cheerful heart is good medicine
Proverbs 17:22
May God continue to richly bless your family. May He give you days filled with much more laughter and a whole lot less pain.
With love & prayers,
The Turners
Dr. Patch Adams is certainly one of God's angels sent to us.
Prayers to all of the coma patients and to all those who have asked us for our prayers. Prayers for those who have no one to pray for them.
Peace from Saratoga,
Linda
Dearest Jessica and Gina, What a special note from Dr. Patch Adams!! He really is doing God's work in this world. People like him (and you both!) inspire us to focus on the "bright side" and keep the joy alive in our lives and that is so very important for us all to keep in mind. Also, I had a silly memory for you. Remember Molly's wedding in New Jersey? Bet I made you smile!! :) And now to look ahead: here is an invitation for you. When you come back to NY, I would like to invite you on behalf of our rosary group to come and pray with us in thanksgiving for your lives and your friendship. Our group prays for you with every rosary we say together, and so many of us have you in our private prayers as well. Take care!! Thinking of you... love always, Angel xoxoxoxoxoxoxoxx
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