Jessica's Journey: Happy Father's Day!

Sunday, June 19, 2011

Happy Father's Day!

Dad and me

I know I always write about my mom, since she is here with me physically as my advocate and source of strength all of the time, however, my Dad has been a very important part of my journey here as well, as a source of strength both emotionally and spiritually.

So, today, Father’s Day, I thought I’d share a little bit about him.

To start with the basics…My Dad’s name is David. He is 57. He loves the beatles and he loves to read. He is a huge American history ‘buff’ and He is a computer genius. He enjoys collecting things (too numerous to mention!) and he loves doing puzzles.

He can answer any trivia question on any of these topics and he can hold a conversation with anyone, at any time.

He is hilarious and he is always quick to have something witty to respond back with to any comment.

His greatest passions in life are Jesus and his family.

He loves being a volunteer fireman.

After my sister was born, my Dad was feeling very outnumbered in our home. He decided that he needed a place to go where he could just be a ‘guy’ and do ‘guy’ things. And he found that place at the local fire department.

Yes, I guess you know you have had too many daughters when you are willing to go and throw yourself into a burning building just to have some male bonding!

But while everyone else saw him as a strong fireman and leader at work---by day---by night, he was back to playing the part he was born for- the role of Dad.

He has always been the type of dad who has found joy in doing whatever brought joy to his daughters.

He will probably kill me for sharing this, but my Dad is one of probably only a few fathers out there that I know of did this for his daughters… he played dolls with us.

But oh, he did not just play. He brought them to life! He would give them unique names, make up funny voices for them and hilarious stories about them.

We had years of endless fun doing this. I honestly don’t know who enjoyed these games more… us or him! (Actually, I think Mom did, because as long as daddy was playing with us- we were entertained and not bothering her!)

My Dad loves Jesus and his faith defines who he is more than anything else.

This was most evident when after going through the coma and having memory loss, the first thing that I recalled about my Dad was that he loved the bible!

It wasn’t his name, his age, his profession, his hobbies, or anything else that came to my mind first, it was his love for Christ.

I think that is pretty meaningful and speaks volumes to the type of man my Dad is.

For as long as I can remember, every night before bed my Dad would tell me bible stories. He would not just simply read them though…just like he did with the dolls, he knew how to make these stories come alive, too!

Yes, David, Goliath, Moses and even Jesus each had their own special ‘voices’ and ‘personalities’ that Dad would put on to go along with each story!

I am so thankful my Dad instilled the truths in those stories into my heart and mind at such a young age. I never could have known just how much I would depend on those messages of God’s love to get me through my illness.

I’m so thankful that God has given my dad to me as my earthly father and I am so thankful to my Dad for teaching me about Him, my heavenly father.

It has been the greatest, most valuable gift he could have ever given me.

“Fathers, do not exasperate your children; instead, bring them up in the training and instruction of the Lord.” (Ephesians 6:4)

Dad, You are a great living example of this verse!

Thank you for teaching me, loving me, correcting me and guiding me. Thanks for being a wonderful father, one who loves unconditionally and who would sacrifice everything he has in his possession for his childs health and happiness.

I love you!

Happy Father’s Day!

Jessica xo

***To Post A Comment-Click on Comments Below***

6 comments:

Anonymous said...: Joshua 24:15
... But as for me and my household, we will serve the LORD.

What a wonderful tribute to your Dad.

Happy Father's Day, David!

May God continue to pour out His blessings on you and your family. May He heal you both and reunite your family very soon.

With love and prayers,
The Turners; June 19, 2011 at 9:54 AM
not a minx, a moron, or a parasite said...: This is so beautiful! Happy Father's Day & God bless!; June 19, 2011 at 10:12 AM
Rosemary and John said...: Dear Jessica,

You are wise well beyond your years. It is rare that a young lady would have such insight into her own Father as a person AND be able to articulate her feelings as beautifully as you have. You are so fortunate to have him (and your Mom) as they are fortunate to have you as their daughter. We loved reading the "inside story" on your Dad, esp. about the dolls! That really illustrates his love for you! We especially loved hearing about how he gave God and Moses, etc. their own special personalities and voices. What a cherished childhood memory! It is a beautiful thing to be able to tell our parents how much we love them while they are here with us on earth. One more quality of yours for us to admire. God Bless all of you, today and always for being His followers here on earth and for spreading His word to those whose paths you cross.

Much Love,

Rosemary & John; June 19, 2011 at 10:23 AM
Fern said...: I have fallen behind on reading the messages you post. Glad I read this one first! What a wonderful tribute to your dad, with humour and warmth! I have continually prayed for the part of your family that does not remain with you in Monterrey. How hard it must be for them and what a tribute to you that they continue to stay strong for you!; June 22, 2011 at 12:36 PM
Anonymous said...: Jessica

What a great tribute to your Dad. He really is a wonderful person and father. You are an incredible family and we are so happy to know you.

Love
Paula,Ashley,Ray and Kevin; June 24, 2011 at 2:29 PM
JJ said...: Jessica,

I feel so blessed to read your blog; and have almost been afraid to look. I know your dad, and that he would have, and has, given anything to take your pain away.

I wish I was so lucky.

I was supposed to call, while in a horrible flare of my own RSD which developed after a recent hip surgery in April, and as he put it, "Pay Homage to My Father."

To the father whom, when I was able to get out of the house to meet him for breakfast, and mostly was me watching him; told him about the RSD. "Oh," was the only response I got-verbally. I'd offered him 2 pages of brief information on RSD. It was left on the table.

God has belssed you with a wonderful and caring family; and I know Father's Day has come and gone, but my wish to you all is that you are able to celebrate both Mother's and Father's Day Year round. It sounds like you do.

I'm fortunate to have friends who have been supportive--like a family. So, this RSD is new to me, but you and your family are an inspiration. Would it be okay for me to list your blog so that others may also be inspired by your courage--and that of your family.; July 4, 2011 at 2:19 AM

Post a Comment

Subscribe to: Post Comments (Atom)

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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.