Hi to all,
Thanks to all who continue to pray and think about my sweet Jessica. Memories are a strange thing. There are the memories we have that are so special, so dear to our hearts, like the birth of a child, your wedding day, your first kiss, and for me, walks on the beach picking seashells. Then there are those memories that we choose to forget, like the death of a family member, illness that came and stayed, or the first time you realize that life is not always a bed of roses.
But, even with all these memories that we have stored in our minds, you come to realize how powerful the human brain is in what it chooses to remember and what it chooses to forget. In trying to help Jessica recall those memories, those special moments of her life, you come to understand how very important it is to make those memories everyday.
You see, sometimes, it's not only in those momentous occasions that the best memories are made; but in those little things like swinging on a swing in your backyard or in running around the block with your dog, that the most treasured memories are made.
So, my gift to you all, in thanks for all your continued prayers for Jessica, is to go out this weekend and make some of those memories with your families; you will be so happy that you did!!!
Jessica says hi to her Dad who she remembers is a volunteer fireman and loves the bible. She says hi to her sisters, Katherine and Michelle, who she calls the girls on the phone, because that's how they communicate, and she says she loves me, because I take care of her so well and I'm her Mom!
God bless you all,
Go out and make those memories,
With Love,
Jessica's Mom
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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!
6 comments:
Good Bless you two! Even though I am setting out to enjoy the last weekend of Summer, I have you in my mind and prayers hoping that some day soon you'll be out picking those shells and enjoying the sun and fun. Love ya, Barbara
Savoring memories, looking forward to tomorrow are so important. But thank you Gina for reminding us, THERE IS NOTHING LIKE THE PRESENT.
Linda in Saratoga
Jessica,
One day this summer I had the privilege of speaking to your mother. Across the miles, I could sense a tremendous love and faith in God, along with a determination to continue the journey, step by step, second by second, day by day. You possess these same qualities and many more. Your story is being shared in many places to bring hope to others and to bring support to you. Prayers are being offered at Marco Lutheran Church every day on your behalf. Our congregation will be even more aware of your courage in the days to come. Tomorrow we will hear the story of Jesus healing many, some who thought they were unworthy and somehow beyond God's grace and love. Jesus welcomes us all and promises to work within us His presence and restoration. One day I hope to have the privilege of meeting you, your mom and your dad and your sisters. More than that, I hope that one day you will enjoy more fully and completely what for now seems to have been so far out of your grasp. God is good and His purpose and timing is often beyond our comprehension. He does this to see what is in our heart and to provide for us the privilege of holding on to His gracious hands. My prayer today for you is that you sense the love of those around you and the love and compassion of those who are inspired by your journey. Be assured that God holds you in His hands. Keep grasping, reaching, trusting and loving.
Peace and Joy
Pastor Kevin
Dear Jessica, I am inspired by your strength and determination in working every day towards your recovery. Your mom is so right about the smallest things sometimes making the most important memories. My daughter Sarah remembers that you used to babysit her when she was little. She said that she loved when you babysat because you were so nice and you always brought crafts for them to do with you. Jessica, you have always had a beautiful smile and a kind word whenever I've seen you, even in the pain of your illness. Hang in there, beautiful girl! We are all praying for you and your mom and family daily. Sending you big hugs, Love, Angel
Dear Jessica, Every day your amazing brain is recovering all the bits and pieces and one day soon in the future you will be able to look back and realize that life is worth every precious little morsel that it has to offer . Everyone is stored in that precious memory file and are awaiting their moment to once again say hello to you along your path to recovery. Love Uncle Vinnie and Aunt Judy . Dear Sarah , What a beautiful message you are truly amazing ,what incredible strength .
Hi Jessica and Mrs. Stevens,
I can only imagine how this has shown you what all those "little" memories truly mean to us. Isn't it strange how this journey brings so much we don't think about into a new light. I know I look back on each day now, remembering what new things I did and treasuring what a joy it was to experience these things. I am two years out of my coma and these things still continue to happen no a daily basis. And I do have to say, they are joys like none I have ever felt. I will continue to pray Jessica recovers all the old memories and look forward to the day she can begin discovering all the new ones to come. Jessica, it is an exciting thing. It is like a joy I cannot describe.
I also wanted to share with you a song I was listening to the other day. I have been praying for you guys and felt like He wanted me to share this song with you. It is called "God of this City" by Chris Tomlin.
You should be able to hear it at the following link on YouTube:
http://www.youtube.com/watch?v=d61LamkXfwk
If you can't and the link doesn't work, you can probably go to YouTube and type in the name of the song and here it.
"Greater things are yet to come, and greater things are still to be done in the city..."
I love you guys,
Lindsay SPengler
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