To all our family and friends,
Sorry I didn't blog yesterday but it has been a bit stressful these past few days. As you know, Jessica developed a high fever and tests were run to determine the cause. She has been put on two different antibiotics to treat the infection in her body. She also had to have mini-surgery to replace her central line catheter. It is always an "adventure" (for lack of a better word) when Jessica is in a hospital and you come to expect even the unexpected! Hopefully the following days will be easier than the last few days.
I am writing this at 1:00AM, Mexico time or 2:00 AM USA time, and Jessica is finally asleep; for how long, who knows? I know that I am feeling very tired myself tonight. The past three weeks have been such an emotionally and physically draining experience. As I gaze out the window of the hospital room and look out at the lights of the city of Monterrey, Mexico; and I hear my sweet daughter trying to get any sleep she can, I realize that this is now our "home away from home". And, I have to wonder, how my family is doing in N.Y?. (David, Michelle and the dogs). How Katherine is doing away at college? How my family is doing in Florida (my mother, brother Vinnie, Judy, sister Carol, & Anthony) - are they all well & fast asleep???
And, how are you all doing - my extended family, friends, and even strangers? I hope you are all well and fast asleep. I have to go as it has been such a long day, a long week, a long couple of years.....Here's hoping for a good night's rest for one and all!
Peaceful dreams,
Jessica's Mom
Thanks for all your continued prayers for Jessica
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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:
Gina and Jessica,
Best wishes and prayers for continued rest, reduction of the fever, and resumeed progress on recovery, with most importantly the journey home to your family and friends.
Each day our thoughts and prayers are with you both as we complete our days activities, and give thanks for the basic gift of time we have have to spend with our family and support of our friends.
Kathy, Julia, and Bill.
Hi Jessica and Mrs. Stevens,
I have been up for several hours tonight and felt the Lord putting you on my heart on many occasions tonight. Know that you are both in my prayers.
While I was up tonight I was spending some time in worship. One of the songs I came across is called "From the Inside Out". One of the lines says, "Everlasting, Your light will shine when all else fades, Never ending, Your glory goes beyond all fame, And the cry of my heart is to bring you praise, From the inside out Lord, my soul cries out"
You know, that is just so where we were at the time of such dark, scary times. My soul cried out to God. But as the song says, when all else fades, His light will shine with a never ending glory.
The Lord has Jessica in his arms; the Great Healer and the Great Physican.
We love you guys.
Love In Christ,
Lindsay Spengler
Dear Jessica,
I am constantly praying for you and thinking about how you are. I can't believe we have been friends for over 20 years. I have so many incredible memories of our friendship. I know you are going to come out of this better than ever so when you come home we can make even more memories. I miss you more than words.Love Love Love you!
Xo,
Ashley
The girls at Cecilias are all fine, Gina, and waiting for you and Jessica to be fine too! God bless and keep you both in his arms. Love, Bonnie
Dearest Gina, My heart goes out to you in love and friendship. I know a little of how tough it has been for you, Jessica, and your family over the past few years. You have done so much for Jessica, gone to see so many doctors, researched so much, spent so much time on the phone. Yet, you somehow also manage to be there for David, Katherine, Michelle, and your Florida family, and friends, whether in body or in spirit. You are an amazing woman, Gina- so caring, loving and compassionate. It is incredible how strong you are, yet even the strong need rest. I pray for you that the peace of God, which surpasses all understanding, will guard your heart and give you the rest that you need. I will also keep praying for Jessica for continued progress in her healing. Before we know it, we will all be together again, with us all laughing and me raiding your candy jar (trolling for chocolate, as you know!) Love you Gina, and big hugs for Jessica, Angel
Prayers will continue. I hope that you will take a little time for yourself to rest and and get some strength for yourself.
I am glad to hear that Jessica got a little sleep.
love from Saratoga,
Linda
Hi, Jessica and Mom, this is Dave Long, Pastor of The Union Church of Monterrey. We received a phone call this morning telling us that Jessica is here in Monterrey in the Hospital. If you would like, I would be pleased to come and visit with you and pray with you. You could call me at 8346-0541 or e-mail me at pastor_long@yahoo.com. We will put Jessica on our church's prayer list and I will activate the local ecumenical prayer chain for her also - Christian friends from the three local English-language churches will be praying for her. I pray your day will go well and the fever will leave.
I'm so glad to hear you both are getting some rest! Jessica, you're going to need all the strength you can muster to fight off this infection. You've got a long road to recovery ahead. Rest now.
You continue to be in my family prayers daily. My parents and Debbie ask how you are doing daily and I keep them updated via your blog.
Sarah, you were always there for my family as I fought the RSD in my coma. Thank you for being their support group.
Rest and recover. You're in His hands. He is the ultimate healer.
Love and blessings,
Emily Wilford
Dear Jessica and Sarah, We are all doing well and are so happy to hear that Jessica is getting some well deserved rest . Please get some rest for yourself . Get some fresh air and sunshine every day and keep yourself safe and healthy. Just think of all the accomplishments that you have made during you're journey with Jessica . We are all so very proud of both of you .Have pleasant dreams and we pray Jessica awakes free of fever. Love and Prayers ,Bro Vinnie
Jessica and Sarah,
I was driving over the bridge this afternoon on Marco Island and thought of you. From the bridge as you know there is a great picture of God's creation. You are both spectacular wonders of God's special creaion. Just hoping and praying that the fever is breaking. God is good. Rejoice in the Lord.
Peace and Joy
Pastor Kevin
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