Friday, May 31, 2013

Rest in peace, Johnny Boy

There are some people you meet in life that you will never ever forget. Your life is better, richer, and happier for having known them. It is a special connection that only God can make. For me, John Roach was, and will always be, one of those people.

John and I met three years ago, under less than ideal circumstances. We were both down in the hospital in Monterrey Mexico, receiving ketamine treatment from Dr. Cantu, hoping to put our agonizing pain from Reflex Sympathetic Dystrophy into remission and gain some semblance of a normal life.

I had been in the hospital for nearly 10 months when we met, and Rosemary, John, and my mom and I quickly hit it off and became friends.

John told me how up until 9 years ago, he had been a very active man. He volunteered as a fireman and worked at a very physically demanding job at a utility company.

That is, until he had an injury that changed everything and he developed RSD.

Before RSD John also loved singing. He told me that he pursued his wife, Rosemary, by singing outside her bedroom window until she finally agreed to go out with him. He promised her that if she would marry him, he would sing to her everyday for the rest of their lives.

When I met John at the hospital in Mexico, even laughing was not possible for him. Any type of activity at all that required the use of the muscles in his neck caused him severe pain flare ups in his neck, shoulder, arm and hand.

Needless to say, singing was out of the question...

Rosemary has referred to the day of John’s injury as “The day the music died” in their household.

The suffering that this disease causes, and the things that you lose because of it, never cease to amaze me. But how special people can come into your life through this pain, continually amazes me as well.

My mom and I always felt a very special connection to both Rosemary & John and feel so blessed that they became a part of our extended family. It's weird to think that we have only known them for 3 years. Our bond goes so deep it feels as if we'd known each other forever.

Last year I was back in the hospital. On the morning before my surgery, I got a special call via skype. It was John. He said that he had a surprise for me—he was going to sing!

I had the honor of being the first ‘concert’ that he had performed in years!

He sang “You’ve Got A Friend” by Carole King.

.”…You just call out my name/And you know wherever I am/I'll come running to see you again/Winter, spring, summer or fall/All you have to do is call/And I'll be there/You've got a friend…”

John's voice was so clear and beautiful. Definitely a God-given talent.

On May 21st I was backing up some files on my computer, and I came across that skype video of John singing to me.

I called my mom over to watch it with me, and said, "we should call John tomorrow."

But tomorrow never came.

John, the next day, when I heard the news that you were gone, my heart stopped. To know you felt such extreme pain that you couldn't bear to live anymore. Nobody can ever understand another's pain, but I feel like those of us who have lived with the agony of RSD can understand where your mind was in those moments. You were so, so strong, for such a long time.

Words escape me.

However, the bible says this:

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Jesus Christ our Lord." Romans 8:38-39

John, I know from our many conversations that you believed this.

I believe you are now seeing Jesus, face to face. Safe and sound.

I see you laughing and smiling, as you run recklessly into Jesus' loving arms, feeling no pain as you move, for the first time after so many years of suffering.

I hear you singing along with the angels, fully clothed with a healed mind and a brand new body.

I see you reunited with your beloved cat, Frankie boy. I see you happy, and at peace.

.”…You just call out my name/And you know wherever I am/I'll come running to see you again…”

I know where you are and I will see you again.

John, We will all love you Forever.

You've always got a friend.

Love, Jessica

In loving memory of John J. Roach
June 14, 1959- May 22, 2013


Rosemary said...

Dear Jessica,

I love you and so did Johnny. Thank you for honoring him and keeping his memory alive. He is another one of your many angels now. He is always with us.

Love you so much,


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Dearest Jessica --

As always, so beautifully written. Your heartfelt feelings come through with every word you type. I am so very sorry for the loss of your dear friend. What a special man . . .

With love,
The Klatts

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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 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!