Hello To All,
To view Jessica on Fox TV, Click on Link Below:
http://www.youtube.com/watch?v=PW_vstm0bS8
UPDATE ON JESSICA:
As you know it was necessary to hospitalize Jessica this past Thursday.
Tests revealed that she is currently fighting two infections - gram negative bacteremia and candida.
Dr. "Febricula"(aka Dillman) has changed her antibiotics due to culture sensitivity tests. She is currently on merrem, tygacil and equalta. The fevers have been responding to the infection. The hope is that the medi-port will not have to be changed.
Due to the infection, however, Jessica is experiencing a lot of pain. As you may recall, Jessica's RSD came from infection and not injury - and so it is not good when she gets infection. Some of the lesions are returning to her right arm and right leg. Dr. Cantu is attacking this with giving Jessica ketamine boosters every day, until things quiet down and she starts to feel better.
Please pray for Jessica and pray that things go in a forward motion. She is discouraged, as you can imagine. We have been praying that God performs his healing miracles here once again, along with Dr. Cantu(Green Shirt), Dr. Dillman (Febricula),and Dr. Luigi (Luis).
Tomorrow she will be put back on TPN- due to her gastric symptoms and to help her nutritionally. She will also be put on IVIG, an immune system booster, with the hopes of building up her immune system and to try to normalize some of her blood counts, as well as to try to reverse some of her symptoms as well!
I will keep you all posted....
In God's love,
Sarah Gina (Jessica's Mom)*
SPECIAL FUNDRAISER THIS WEEKEND:
With all that has been going on I forget to mention a Special Fundraiser that is taking place this weekend in Garden City, New York. It was organized by The Stober family, and many items have been donated for the sale.
The Garage Sale Fundraiser will be held AUGUST 13th & 14th at:
10 St. Paul's Place - Garden City, New York
If you are in the area on these days - please feel free to stop by and support this wonderful outpouring of love and support for Jessica and our family.
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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!
10 comments:
Good to hear that Jessica's fever is responding to the medications.
It is always so hard and frustrating when we take a step backwards but remember from where you began, Jessica. You are much farther ahead now then when you began and you will begin to move forward again.
It reminds me of when you watch people climb a mountain. Step by gruelling step they move up the mountain and every now and again, they slip back part way down. They take a few moments to regroup and continue the climb back up the mountain.
Psalm 18:29
29 With your help I can advance against a troop;
with my God I can scale a wall.
Glad to hear they will be giving Jessica an IVIG. Some other RSD patients have received this and reported benefits.
As I write this, a friend's husband is on day 2 of his IVIG treatment for a different neurological issue (I am happy to report that day one went very well).
May you feel God's strength as He carries you through this setback and may you begin to take more steps forward.
Hang in there, Jessica!
With love & prayers,
The Turners
I like the way "the Turners" put prgress into perspective. Yes it must feel like that high mountain to you Jessica but you are one strong little chickie and we know you will make it to the TOP!! Climb on the arm of God and he will lift up UP!!
Love and prayers for strenght, healing, and peace!
Nancy
Sorry to hear you are back in the hospital. My prayers are with you everyday!
Love from VA
Dearest Jessica and Gina and Michelle, It sounds like these are challenging and discouraging times down there for you. During these times, I ask you to remember the magnificent rainbow over the Sierra de la Silla mountain that you saw from your apartment window not long after Hurricane Alex came through. That day, Gina, you blogged that the rainbow is a promise from God that in whatever mighty storms we encounter in life, we must remember that God is ALWAYS with us. Even in these hard times, God is surrounding you with His grace and His love. You have been through hard times like these before and you made it through them. Take strength in those experiences and lean on your faith. You will all make it through again. I believe that with all my heart. You are in my prayers every day and night. Hang in there!! Love always, Angel xoxoxoxoxoxoxoxo
Thanks for the update. I lift you all up in prayer each day. Thank God her fevers are responding to the treatment and I continue to pray that everything else will too. Please keep me posted about the IVIG. I have often thought about that for myself.
Just finished reading 90 minutes in heaven. Fantastic book. I bought you a copy because while that person does not suffer in the same waty, he is in constant pain and he speaks candidly about the ups and downs that go with that. I found myself nodding along a great many times! I look forward to the day I am well enough to bring it to you.
A word of encouragement today:
Don't be afraid, for I am with you. Do not be dismayed for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand. Isaiah 41:10
It is a real comfort to know that what God has written in His word is a promise we can cling to as well as a comfort in tough times.
May God give you rest while you are in the hospital and may you find peace in the knowledge that you are loved and cherished by so many but most improtantly, by God.
Dear Jessica and Gina,
"Let us run with endurance the race that is set before us." Hebrews 12:1
Continue to persevere and know that with God's help the race will be won.
God bless you both,
Linda Wardley
Hang in there Jessica! We are praying and thinking about you daily. Keep the faith!
Love to you and Sarah Gina,
Carol & Ray xxoo
Our friends are God putting angels on earth. Jessica you have so many angels with you and your family. Even the Lord took time to rest. So rest and march on tomorrow toward health.
I pray for you each day.
Your blog has taught us so much about so many of us that have faith and hope.
Thank you for being my friends.
Linda in Saratoga
Dearest Jessica and Gina and Michelle, We had so much fun at the tag sale this weekend! We missed you guys!! Thankfully the weather held out and so many people came to support Jessica and to buy some of the many items that people so generously donated. Gisella and Lou are very special people, so dedicated and generous. They received hundreds of items at their home, stored them, tagged and cleaned and organized, donated, set up, and worked tirelessly to make the sale a success for Jessica. It was so much fun really getting to know them and work with them!! We sang Happy Birthday to David on Friday, since he was devoting his birthday to working for Jessica! I so enjoyed working with Katherine and Paul as well!! Adele was so great too, and wonderful Vilma took photos of everything! We had a really great time, in the spirit of working for our special friend Jessica!! We missed you guys but you were on our minds the whole day. I hope things are going better down there in Mexico. Hang in there!! I am praying for you daily... Love always, Angel xoxoxoxoxoxoxo
Dearest Jessica and Gina and Michelle, We had so much fun at the tag sale this weekend! We missed you guys!! Thankfully the weather held out and so many people came to support Jessica and to buy some of the many items that people so generously donated. Gisella and Lou are very special people, so dedicated and generous. They received hundreds of items at their home, stored them, tagged and cleaned and organized, donated, set up, and worked tirelessly to make the sale a success for Jessica. It was so much fun really getting to know them and work with them!! We sang Happy Birthday to David on Friday, since he was devoting his birthday to working for Jessica! I so enjoyed working with Katherine and Paul as well!! Adele was so great too, and wonderful Vilma took photos of everything! We had a really great time, in the spirit of working for our special friend Jessica!! We missed you guys but you were on our minds the whole day. I hope things are going better down there in Mexico. Hang in there!! I am praying for you daily... Love always, Angel xoxoxoxoxoxoxo
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