Monday, October 5, 2009

Rough Night/Rough Days

Hi to All from Mexico,

It has been a difficult night and a rough couple of days for Jessica. We are still waiting for the times for the specialized tests on Jessica's eyes. They want to do an exam called a "retinography", as well as an "evoked potentials" test on the mechanisms of the eye. As I have come to know, from our many stays in hospitals, nothing gets done on the weekends! That holds true in Mexico as well. For Jessica, these tests can't come soon enough as her vision problem, on a scale of 1 - 10, with 10 being the worse is a 9 1/2. As she says, "Mom, I have to say it is a 9 1/2 because saying it's a 10 is like saying I am blind!" These have been some troublesome days here in Mexico, but the doctors have been great and we know they are trying to get to the source of the problem, but we need answers really soon!
Also, we cannot continue with the ketamine boosters which are essential for the success of the treatment, and help to alleviate the pain caused by RSD, until the vision problem is resolved!

Please pray for Jessica, for her vision to be restored, for the doctors, for the tests, and for all people that suffer with RSD, Lyme, cancer, etc. and any other horrible illnesses!

God bless you all,
Jessica's Mom

Also: I couldn't be surviving here in Mexico without the help of the Emmanuel family who are here with Devon (Cathy, Ed & Pam). They help to bring me food, buy diapers for Jessica, buy items in the store, etc. But also, just for their companionship and understanding as well.

Also Pastor Long & his wife Sue and all the ladies from the Union Church in Monterrey. They bring food, books, magazines, and more importantly the message of God to our room!

***Also: Our very special angel - Dr. Rainbow - who comes into Jessica's room everyday - with all of her special goodies - like homemade custard and special applesauce (made by Chyo ) and bouncy balls and Nino Jesus - I could go on and on - but, more importantly it is the LOVE she brings with her, as only she can, that has come to mean so much to us - more than she knows!!!***


***To post a comment, CLICK on comments below***


Anonymous said...

Hi Jessica and Mrs. Stevens,

We continue to pray for you both each and every day. I know these days are extremely long and the waiting is most difficult. We pray these days will soon be behind you and the ketamine boosters can be continued soon. I can only imagine how difficult it is to have your vision impared. I struggle briefly with some difficulty with my vision and it was quite minor compared to what you are experiencing. I know it was extremely difficult to say the least. People used to wondering, out of all the pain I was feeling, of all the nausea, why was THIS such a problem. I used to try and explain but I finally realized, it is something that you can only understand if it is affecting you 24/7 and is inescapable.

I was listening to this song earlier and make this my prayer for you today. That God Heals all that affects you, all that has been a struggle in these last years of sickness.

The song is called "Healer" by The Planetshakers

Here is the link and I have included the words after.

You're my Healer

You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my Healer
I believe You are all I need
I believe You're my Portion
I believe You're more than enough for me
Jesus You're all I need

My Healer, You're my Healer

Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You
You hold my world in Your hands

I pray that today, your vision will be restored, and more than ever, you feel the presence of our Holy Father.

I love you both.

Lindsay Spengler

Anonymous said...

Hi Sarah:

I just want to remind you that you are not alone.

You have my number.... use it any time for any reason...

Give my best to Jessica and tell her she is one day closer to her healing....


Monterrey, Mexico

Anonymous said...

Close your eyes and think about the birth of our Lord. It was no easy task for Blessed Mother and Joseph. But we are luckier as He is always there to carry us through our difficult times.
Peace and love
Saratoga Linda

Anonymous said...

I have been checking the blog regularly to see if Jessica is responding well to the treatment. I hope things get better for her soon and she gets to come home much improved.
From your friends at Bioscrip Infusion , NJ
Richard Price, PharmD, RPh

Marianne said...

Gina and Jessica, We are praying and keeping you in our thoughts everyday. Know that you are not alone. Sending you lots of love today :-)

Angel said...

Dearest Jessica and Gina, Sending lot of love and prayers to you from GC! We are praying for you all the time. We prayed for you at a women's circle out on eastern LI over the weekend. I keep you in my intentions in church and at home, and think about you during the day as well. We are looking forward to the Fire Dept fundraiser on Saturday. Hang in there, Jess and Gina. It's always darkest just before the dawn. With love always, Angel

Anonymous said...

Dear Jessica and Gina,
"God never gives strength for tomorrow or for the next hour, but only for the strain of the minute." He is with both of you every minute and will give you all the help and comfort you need.
With love,

Anonymous said...

Dear Gina & Jessica
We continue prayer for you everyday
and God always is there
love! Cecilia

Anonymous said...

Dear Gina and Jessica,
I am praying for Jesus to touch Jessica's eyes and heal them. You are always in our prayers Jessica.
Gina, for you I pray for continued strength from "the Living One" (Rev 1:18)

with love,
another RSD Mom

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 ill

The 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 lesions

Jessica'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 camp

Four 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 rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During 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. Kirkpatrick

Upon 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!