Hi to All,
As we speak, Nancy, who is here helping us, is on her way by mexican taxi to try and retrieve a Fed-Ex package that has been sitting in customs at the Monterrey airport. It seems that it is very difficult to get any type of medical supplies into Mexico, along with any type of food items. Contained in the package are special cushioning bandages that I need for Jessica so that she doesn't get any skin breakdowns. These bandages are costly and not available in this hospital. I had to send Nancy with our passports as well as a letter from the doctor stating that the bandages were a medical necessity! Pray that Nancy is successful or I guess I will have to talk to the American consulate here in Monterrey!
I don't know what I would have done without her today!
Jessica was able to retrieve more bits and pieces of her memory yesterday and we are still standing strong in the knowledge that it will all come back fully in the days ahead. She continues to experience different
side effects from the ketamine, some more disturbing than others. It is my hope that these will all go away really soon for her! They have a whole team of doctors here at the hospital who all speak english, but the nurses don't, so it can become difficult for her at times. Thank God I can speak understandable spanish - it has come in handy so many times already!
Thank you for all of your continued prayers for Jessica.
Till tomorrow,
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!
5 comments:
Dear Gina
Thank you for your continued dedication in keeping us informed.
We are with you in thoughts and prayers. I wish we could be there in person to give you a hug and kiss.
You have been on such a long journey but know that the end is near. Jessica is healing. God will continue to be with you and give you strength.
Prayers and love,
Saratoga
We are praying for you and Jessica here in Midlothian. You are constantly in our prayers. Many of my friends who know my daughter's RSD story, now know Jessica's story. You have a very special place in our hearts because we know RSD and we admire your courage and strength, but most of all, your faith!
In faithful and trusting prayer for you and Jessica.
Rita MacDonald
Yes, we had several trips to the airport for with very similar issues. I know several packages were also sent that never arrived. We can put a man on the moon but ask someone to send something to Mexico, look out. ;) I pray you were able to get the supplies you needed and without any more hassle.
We continue to keep you all in our prayers here. I know these days must be incredibly difficult and draining beyond description but know that the Lord is walking each of these steps with you. I know at some of my darkest times, in which God felt silent and the most absent, are now days we are able to look back on and see his hand more defined than ever. At the time however, it certainly didn't feel that way.
We love you guys and keep praying...
Lindsay Spengler
hello.
Im Daniel, from Colombia southamérica.
i heard about you and Jessicas casa, thanks to VaughDe, Sarah´s Peterson mother. we are friends.
i am just reading about you, but so far i see, you are in Mexico, and Ketamine treatment is helping Jessica. i know she had HBOT sessions sometime. so i want to talk with you, to offer you help with this, becuase my father is MD here, and he has 2 hyperbaric hard shell chambers, and he has treated many lyme symptoms..
my mail: danielandrespat@hotmail.com
or in facebook you can look for me, with the same email..
wish you the best, and Jessica is in my thoughts too.
hugs.. hope to hear you soon
Danny
Hello again. i see your name is GINA, ... my pleasure to meet you
this is Daniel from Colombia.
i really sorry about how much you and Jessica have to pass through, but you are very inspiring and encouraging too.
I heard that Jessica is improving noticeable with Ketamine. do you still in México? for how much long?
i seems to have at least one of lyme coinfections, but i only found this recently,, so im learning about lyme from the begginig of this year..
since Jessica is finally improving in someway, and i hope this continues in the next months,, maybe when she is a little more able to function, and less delicate and disable,, you can see again the option to complement her recivery with HBOT (hyperbaric), if she could handle it the time you did that... or we can see options if we can help her somehow...
a big hug and message of love and support to your brave angel..
are you ok in Mexico or need any support. i have a few friend and family there!
Daniel. (danielandrespat@hotmail.com)
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