Hi to all from Mexico,
Jessica is entering Day 4 of the coma at 4:00 PM today and oh, how these days seem so long! Dr. Cantu, Dr. Luis, Dr. Fernando, and all the team are amazing. Today I have been told not to talk to Jessica as these next 2 days before emerging from the coma are supposed to be quiet, as her brain needs to rest and get ready for the hard days ahead. She does seem more restful today than the past 3 days and the lesions on her arms, stomach, and legs are dramatically lessening and appear less red and angry looking.
I do tell her I am in the ICU room with her and I know, as only a mother can know, that she hears me and senses my presence with her. Tomorrow, our dear friend Nita, who is also a nurse, is coming to Mexico to help Jessica in those first difficult days of coming out of the coma. I am told that we will need to be fully rested in order to help Jessica the most, as sleep during those days for Nita and I will be minimal.
On a personal note, I wanted to thank Debbie and the Wilford family who are also here with their loved one Emily, who is undergoing the ketamine coma at the same time as Jessica. They have been so helpful and supportive down in the ICU. Also, the Brown family who have been in Mexico since July with their son Justin, who also underwent the coma treatment. They are so helpful in that they have been here and know the "ropes", so to speak. Along with the Emmanuel family, who are also waiting, we "americanos" have a special bond in that we all have a loved one who has been suffering with RSD and the widespread unbearable pain it causes! Even here, God has blessed me with support from fellow english-speaking americans from the USA.
Till tomorrow, and in God's love, always
Jessica's Mom
"LIFE SETS TASKS FOR EACH PERSON,
WHO IN MEETING THEM,
DEFINES THE MEANING OF HIS LIFE"
God Bless Jessica and all those who are ill.
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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!
14 comments:
Sarah & Jessica - The Lord is working his miracle. In the Bible we've read that He's cured so many while they slept. Now is Jessica's time to rise up from this illness and be well. My entire family is praying for her recovery. Be strong.
Love, Barbara (Carol's friend)
Gina and Jessica, The Bible says Miracles have many purposes --- to demonstrate God's Love, to confirm one's faith, to care for the needy, to show compassion, to prove He is the messiah. I am so blessed to witness this miracle today with you. May God’s Grace sustain you & your family through the recovery ahead.
In Christ’s love, Lynn & Larry.
How I wait anxiously.....praying that Jessica will be healed! Stay Strong, Jessica......the best is yet to come. Your Friend, Crystal Ulmer
Keep those hopeful progress reports coming, Gina! We're rootin' for you, Jessica!
- The Garypies
Hi Mrs. Stevens and Jessica,
I am so happy to hear Jessica is sleeping peacefully and you have been able to connect with the other families in Mexico. It seems that for most of us, we have a special bond. I know it was wonderful for me to see how God has blessed us in knowing other families and crossing our paths at just the perfect time. Though His timing is always perfect, I know there were moments it seemed questionable.
We continue to pray for you all here. God Bless you guys!
Love in Christ,
Lindsay and Sharon Spengler
Dear Sarah & Jessica
I was so glad to hear your voice and that Jessica is doing well. I am praying for you and Jessica day and night. I love you both with all my heart. Hope to see you soon back in Naples with Jessica.
Love and kisses to you both. May God be with you always. God Bless you and Jessica.,...
Love Always ...Mom
Dear Sara and Jessica... I am happy to hear about the lesions looking better. I hope that the next few days go quickly for you both. We are praying very hard for both of you.. Love you both so much...Your sister...Carol
dear sarah and jessica...have only the sweetest dreams that can be imagined for both of you . awake with joy and happiness every single day and let the pain go to sleep forever.love your brother Vinnie
Hi Sarah Gina & Jessica!
Good to see today's progress report. Tomorrow is a big day. I hope you can get some rest tonight. Safe journey to Nita. I too am so glad she can be there for you and Jessica. Prayers are still coming to you from across the border. xxoo Cuz ♥
Dear Gina and Jessica,
We are all happy to hear that the treatment is going well. We will continue to pray for you, Jessica and your whole family. Tell Jessica to keep up the fight and that she is in our hearts and minds everyday.
Love
Paula, Ray, Kevin and Ashley
I wish you the very best. My wife got RSD in October 2005. We know how debilitating that it can be and how hard it is on a family. We have five children of our own. We fortunately found Dr. Kirkpatrick as well and he treated her with the 3 day ketamine infusions. She had the treatment back in October of 2008. She had a great treatment. She was able to use her hand again, write again, wear long sleeve clothes, take a shower, stop taking so many medications, hug and love on her children, feed her self, drive, cook. This list can go on and on with what RSD took away. The greatest thing is that my wife is now pain free and living her life once again. Please let us know how Jessica is doing and if you ever want someone to talk to that has been through this and can understand, please email me, or if anyone reads this comment and wants more info on what helped us feel free. georgess@tampabay.rr.com is my address. I will be looking forward to hearing about all the wonderful things Jessica and her family will get to do once this treatment is over. Things like living your life the way you did before this horrible RSD came into the picture. God Bless....George and Jaime Robinson
To Jessica, Sara Gina and your entire family.
I send my heartfelt prayers and best wishes along with Nita. She is on her way shortly to be an angel on your shoulder to help you though these next few days.
You do not know me but only through her. I try to feel your pain of a child. My oldest, daughter; Lauren is only one year older and can only imagine your struggle.
I cannot say I understand the why’s but God’s will to place you where you are today is in strength; not weakness.
I wish this quote will have greater meaning in the days ahead for Jessica….....
“I am not afraid of tomorrow, for I have seen yesterday and I love today” (William Allen White)
You have my prayers for this small miracle to unfold. Peace to Jessica during her sleep and to you and all but most of all; God’s Blessings!
Robert J Moyer
Dear Sweet Jessica and Sarah Gina,
I will travel to Mexico in the morning and will be bringing with me all of the words, the thoughts, and the prayers of everyone who has been writing to you (or not writing) but has been holding you both so closely in their hearts. It has been so awesome to see God's love and miracles stretching from one country to another. Can't wait to hug both of you. We will get through this together.
Nita
Dear Gina and Jessica, I am keeping you in my prayers throughout the days. I am so glad that the lesions are getting a little better! The Lord is holding Jessica in the palm of His hand as she rests and His love is surrounding her. May His healing presence bring you peace and comfort. Love you both. Till tomorrow- Angel
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