Jessica's Journey: HAPPY MOTHER'S DAY MOM!

Sunday, May 13, 2012

HAPPY MOTHER'S DAY MOM!

Today is a really exciting day!! It's Mother's Day, and obviously, because I have the most incredibly amazing mom ever, I had to mention that today will be the FIRST mother's day that my mom is celebrating at home-- with all three of her daughters-- healthy-- in SIX years!!! Amazing! God is so good!

We are going to spend the day with all of our family, having brunch poolside, in beautiful sunny Florida. It's a miracle!!

My family and I have been blessed with SO many miracles... but the greatest of them all, for me, has been having my mom by my side. Nobody else could have endured what she did, done what she has, been as fierce of an advocate for me and still kept their sanity (ok, I know... the jury is still out on that one ;) ...

Even through the hardest, darkest and most painful times of the past few years, my mom always made me feel that my potential to make it through was as limitless as her love for me... and I knew, if that was true, than I could-- and would-- overcome anything.

Mom, your God-given strength and persistence is what kept me fighting. In the process, you've taught me to be selfless, to love those around me, to trust fully in God, to believe in only the best possible outcomes and in miracles. But quite honestly, just so you know...--YOU are my miracle.

I love you so much!

....WE love you so much!!

Todo nuestro amor para siempre! Te adoro!

Sus hijas,

Jessica, Katherine y Michelle

Also, a very Happy Mother's Day to my very special Nanny Yum-Yum and my Godmother, Aunt Carol! They are my two other 'motherly' influences in my life and their guidance and love has helped me so much, especially in these past few months with my transition back into "home life". I know it would be much more difficult (and less entertaining!) without their presence and support and I am truly blessed and very thankful we get to spend today all together, as a family! Love you!

HAPPY MOTHER'S DAY!

God bless!

Love, Jessica

9 comments:

Michelle said...: Mommy,
I am so happy to be able to spend this first mothers day with you in 6 years! I cannot believe that we are all together again...it is so amazing! You are truly the best mommy in the whole entire world and i could not have asked for a better Mom. Anyone can be a Mother, but it takes a special person to be a Mommy!!! I love you with all my heart!

Love,
Michelle; May 13, 2012 at 9:46 AM
Fern said...: This is a milestone! Enjoy your day, Sarah! You are a great Mom!; May 13, 2012 at 12:52 PM
Katherine said...: Happy Mothers Day to the best mom in the world, i love you sooo much! Thankyou for always being there for me and all of us everyday! Youre one of my bestfriends!! Love you! Xoxo; May 13, 2012 at 1:00 PM
Elana said...: Sarah, just tried to email you & it got sent back so please email me with your new email. I wanted to wish "Florence" a wonderful & amazing mother's day. I have tears in my eyes knowing you're with all your girls.

Happy mother's day super mom!! Big hugs & kisses to Jess!; May 13, 2012 at 4:04 PM
Anonymous said...: Dearest Gina, Happy Mother's Day!! I say this with joy in my heart because I can only imagine how HAPPY you are today!! God has led you through the difficulties and you are now bathed in light. You are an example to others, just like Jessica, even though you never meant to be an example to others. You simply lived your life true to your values of faith, family, commitment, loyalty, perseverance, courage and love. By your handling everything that has happened with Jessica's illness the way you have, you have given us all hope that we can make it through really hard times. Your living faith kept God in the picture even in the times when it was hard to do so and there were many more questions than answers. I think this is what true faith is, much more than just a word or a concept but a true relationship where God knows and we are being led by Him. Thank you for your example of true faith and loving motherhood!!!! You deserve a spectacular Mother's Day today, my friend!!!! Love you always, Angel xoxoxoxoxoxo; May 13, 2012 at 5:40 PM
Marianne E. Quinn said...: God Bless You Gina! You truly are an inspiration to me as one of the Best Moms that ever lived! I second the eloquent words that Angel said!It's easy to be a great Mom when Blessed with healthy children but by your example,You have showed us how to be a great Mom in really trying times! "Thank you for your example of true faith and loving motherhood" Love you Girlfriend!With Love and prayers, Marianne; May 14, 2012 at 12:56 PM
Rosemary and John said...: Dear Jessica,

Your Mother is as amazing a Mom as you are a young lady. You have both withstood the trials and tests of faith, hope and perseverance through the most difficult and painful of times. You did it individually and collectively. I cannot imagine how happy your Mom was celebrating Mother's Day with her three healthy, beautiful, loving and devoted daughters. The sacrifices you have all made being apart from one another is unbelievable. A Mother's love is supposed to be unconditional, but unfortunately that is not always the case. God blessed you with a Mother who is one in a billion!

Sarah / Sarita, you are special beyond any words. May God continue to bless you with the strength and Grace you need to face any challenge as you have these past 6 years. May the difficult days stay behind you and may you enjoy your daughters love in the best of health forever more!

Love and xoxoxo's,

Rosemary, John & Papa; May 14, 2012 at 8:04 PM
Jasondmqd said...: This is a milestone! Enjoy your day, Sarah! You are a great Mom!; January 5, 2013 at 7:58 AM
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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!

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.