Wednesday, February 20, 2013

Fun at sea!!!

Last month, for my 25th birthday, my grandma surprised me with a very special gift... A cruise vacation!!

Me, Mom, Michelle, Aunt Carol &; Nanny would be cruising around the Caribbean together from February 11th-17th!!

It is very ironic that we were leaving on that date, because that is the EXACT day (2/11/06) that I became completely bedridden & I will never forget that date.

To be going on my first cruise ever, and my first vacation since the beginning of this whole ordeal, 7 years to the day later, I thought was a pretty  awesome way to change that day into something positive in my mind!!

So, Monday morning I woke up, turned on the TV and saw this news headline-
"Carnival cruise ship stranded, adrift off of Mexico after fire in engine room"

...Great! I really can't wait to go now! ..Ugh, how horrible for those people!

Faith over fear, we got into the car and proceeded to Port Everglades. With visions of Titanic and Poseidon playing in my head, I prayed our trip would be uneventful in every way possible!

I had never been on a cruise before, so when we arrived, I was totally blown away by the enormity of the ship!!

Here we are, excited and ready to disembark!!

The ship was immaculate. There was an ice skating rink, mountain climbing wall, two stage theaters, two movie theaters, three pools, a surfing simulator, arcade, many clubs, restaurants, activity rooms, etc. was endless!!

On the 5th deck was a Royal Promenade with lots of shops and restaurants!

Our room was on deck 6, it was a disabled room for me, and I was so impressed with it! We rented an electric wheelchair for me to use, and it fit perfectly throughout the room and in the bathroom.

Royal Caribbean has really gone above & beyond to make everything 100% disabled friendly! Every door had a push button to automatically open & ramps to get into every place!

Our first night onboard there was a big 70's theme party, which was really fun!! I danced with all of the village people and finally can understand a little bit of why my mom is so crazy... Blame it on that decade! ;)

Our first port of call was Labadee Haiti.

This port is a private island owned and run by Royal Caribbean, and it was simply GORGEOUS.

My favorite thing about Monterrey has always been the huge, spectacular mountains.

Haiti has similar mountains, AND has a stunning beach too!

Beach+Mountains?! Can it get any more beautiful than this? I don't think so.

In Labadee my mom and Michelle went on a zip-line that is 3,600 ft long and goes across the entire island! They loved it!

View from the top! 500 ft in the air!!!

In Labadee they had a beach wheelchair, which was a huge advantage, so I was able to go all around the island, and even swim in the beach!

For lunch, there was a huge bbq on the beach and Haitian tribal dancers as entertainment!

The next day we were at sea, so we took advantage of the pool decks!

The pools were spectacular, but not heated. So I couldn't go in. I was a little sad, until an hour later they brought out a special lift!! With four men operating it, I was able to get into the hot tub safely!! It was great!

When the itinerary for the next day, in Jamaica was handed out, we soon realized there was literally nothing I was going to physically be able to do there (helicopter rides, horseback riding in the beach, parasailing, and a speed boat ride, were the options!) haha, not happening!

So, my mom went to talk with guest services to see if they had any ideas.

 Valentina, a young woman from Italy introduced herself as the guest service manager and started talking with my mom.

She asked to hear my story, so my mom told her the short(ish) version and she was very moved. She quickly got on the phone with another manager and told my mom "we would like to do something really special for your daughter, so give us an hour and we will call you in your room."

An hour later, Valentina called and said that she had somehow located and rented a wheelchair accessible van, so that I would be able to go on a tour of Jamaica, do some shopping, and eat in a nice local reataurant!

She also told us that that night, Royal Caribbean wanted to treat all 5 of us to dinner at Portofino's,  the fancy Italian restaurant on the ship! She told us to take whatever professional photos we wanted that night around the ship, for free!

AND... She told my mom she had shared my story with the ship's captain, and tomorrow morning at 8:30 he wanted to meet me and give me a tour of the ship's bridge!

We were blown away... We didn't expect, or need all of that!

But we soon found out why Valentina was so sympathetic... She is another miracle who by medical standards, should not be alive.

Several years ago she was in a horrible motorcycle accident and suffered extensive critical injuries, she needed to be kept in a coma to heal... For 9 months!!!

Her mom was told that if she ever woke up, she would be a vegetable.

They were obviously wrong! Her body is now held together by more hardware than you can buy in Home-depot, but she is alive, walking, fully functional & managing a cruise ship!!

All I can say is, How great is our God?!?

The next morning we got off the ship and went to tour Jamaica! Oral was our tour guide and he was so nice!

Jamaica is severely impoverished, and the streets are lined with people trying to sell you something. 

This man, wanted to sell me some maracas, I said no, and than he tried to sell me a basket. I said no, and he said he loved me and asked me to marry him... Ummm?!! mom, help!. Dr. Cantu had told me to try and find a husband on this cruise... hope he approves! :) haha

The desperate look in these people's eyes made me want to cry and give them whatever money I had.

The one thing I couldn't refuse to buy was this Jamaican monkey! He even talks!

We drove through Montego Bay, where there were many huge mansions, very unusual to see after the poverty we just drove through.

I asked Oral "what do the people do, who live in these mansions?"

"They're in the pharmaceutical business" he said.

"ohh like doctors, and pharmacists?" I asked.

" drug dealers."

Ok then!

We ate lunch at a pretty Pier and than did some shopping in the local market.

I came across a man who was selling things he made carved from wood. He had this beautiful cross, and when I said I wanted it, he engraved it for me!

I also brought some t-shirts for my favorite doctors that say " No problem '!" :)

The next morning, at 8:30 it was time to meet the Captain! We got dressed in our most nautical looking clothes, like the nerds that we are, and went up to deck 10.

A second officer, from Mexico, gave us a tour of the bridge:

I never imagined how technical and extreme of an operation it is to run a large cruiseship! So many levers, buttons, and things that could go wrong! Yikes!

It was VERY impressive!! But, not nearly as impressive as who I met while up in that bridge...

When we arrived up to deck 10 there were 8 other people also waiting up there who had been invited to meet the captain too.

Mom and I stood by ourselves, until a man came over and introduced himself. He told us that he was here with his wife, and this trip marked their 350th day at sea!! Wow!!

Soon after his wife came over to us, and said, " If you don't mind, what is wrong? Why can't you walk?"

"Well, it's a really long story" my mom began. "She has a rare neurologic disease, called RSD and..."

Before my mom could even finish her sentence, the woman was visibly shaken and looked like she might cry.

Through her tears she told us that 10 years ago, she was paralyzed on the left side of her body because of RSD that started in her left foot after an accident!

After years of pain, ketamine epidurals and a sympathectomy surgery put her into remission and because it was darkest time of her life, she hasn't talked about it since. ..I was the first person she had ever met with RSD!

After we hugged and I shared more of my story with her, another similarity emerged. The doctor who finally diagnosed and treated her RSD was Dr. Kirkpatrick, the same doctor who sent me to Dr. Cantu! Small world?!

I'm smiling as I write this because it really is just SO incredible that out of nearly 4,000 people on a cruise ship, the two people with a rare, unheard of condition, treated by the same doctor, somehow crossed paths up in the bridge of the ship waiting to meet the captain!

 I love it when God makes these connections for us!!

After hearing my story, the other 8 people waiting up there to meet the captain all came over to me, hugged me and said they would never complain about their aches and pains, ever again.

And here we are meeting the captain:

Everyone keeps asking me "what was the best part of your trip?" i really can't just pick any 1 thing! Honestly, the best part of this trip was truly just being ABLE to physically go & enjoy it! (ok, and the food... Because wow!! Take it from someone who didn't eat for three years... The buffets were heavenly!)

I very often get these moments where I just can't even wrap my mind around things I am now able to do. It's surreal to go from one extreme of being near death and now, vacationing and enjoying my life! I am so grateful and so in awe of God's amazing grace!

I could just watch this all day....

 I have already started researching other ports and cruise destinations in an effort to convince grandma that next we need to take a cruise to her homeland, Italy :) 

I would definitely want to cruise with Royal Caribbean again because the cruise was made so easy and enjoyable because of the their staff, who all went out of their way to cater to my every need! It was truly awesome to be so independent on the ship because it was so handicapped accessible and it was great not having my mom worry about me, because there was literally help all around the ship, should I need it!

I had the most fantastic time. Thank you Nanny for this great gift! I will cherish these memories forever and ever and February 11th will from now on be a happy day... the day I went on my first vacation! 

 can't wait to go on another cruise! Hopefully, we will soon!

Thanks for checking in! God bless!

xoxo Jessica

‘I tell you the truth, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in his heart but believes that what he says will happen, it will be done for him.’ Mark 11:23

Friday, February 8, 2013

El Norte/ Sierra Madre News Report- "Regios la salvan de morir"

Hi all! During my last trip down to Monterrey I was interviewed, along with my mom and doctors Cantu, Barrientos and Dr. Rainbow by El Norte/Sierra Madre newspaper! The article was published today and I wanted to share it with you all. 

Very special thanks and much gratitude to reporter Regulo Cantu, for listening my story and and helping me share my miracle with the people of Monterrey. You did a great job!

*English translation below :) 

Monterrey Doctors successfully treat a young American woman who was about to die from an infection caused by the bite of a tick and that led to Reflex Sympathetic Dystrophy, a rare, painful neurologic disease, that could only be treated with this life-saving experimental treatment in Monterrey.

Jessica Stevens's story is one of hope and pride.

Talk about the fortitude of a young woman who endured two medically induced ketamine comas and her incredible parents who, despite the darkest times, never lost faith and continued to seek a solution for the strange illness that afflicted their daughter.

On the other hand, a success for Medicine in Monterrey, the only place in the world that has successfully treated patients with Reflex Sympathetic Dystrophy using this experimental treatment, thanks to the team led by anesthesiologist Fernando Cantu.

While visiting the city for further treatment, Jessica sat down with us to talk about her miracle that has happened and who made ​​it possible.

“Something rarely seen”

Jessica Stevens was a perfectly normal teenager. She lived with her parents in New York until she was 16 years old.

However, during the next nine years of her life, now 25, her strength and will to live would be put to the test every day.

In 2003, at the end of the school year, Jessica went away to a summer camp where she was bitten by a tick on the back of her right leg. After that, her life changed.

"At first my leg just felt warm, with some itching, but soon I started to feel very sick with fevers after returning from the camp. Something was not right. I had severe headaches and stomachaches, and no doctor could diagnose what was wrong, as the disease continued to progress they said that maybe it was the flu or mononucleosis. It took seven months to finally diagnose me," recalled the young woman.

As the disease worsened, she began to have painful skin lesions and pain throughout her body, to the extent that even wearing clothing became very painful to her.

"I couldn’t be touched, I couldn’t move, I was stuck in one position in bed and eventually my whole body was in burning pain, as if someone had poured gasoline on me and lit a match… I was on fire and I could not escape. Even a small breeze was very painful.”

Jessica notes that despite this, her mother, Sarah Stevens, never gave up. She took her to various universities and hospitals throughout the United States, searching for someone who could help her daughter.

The doctors who saw her said they had never seen anything like it and therefore did not know how to treat it. Some doctors suggested putting Jessica into a hospice and making her comfortable. They said in this condition, she was not expected to live more than a month.

"It was a terrible time to hear all of that; I just wanted to find someone to say: 'I have seen this disease, and this is how we can fix it.'"

But that didn’t happen. Until finally, they found a doctor, who identified the disease: Reflex Sympathetic Dystrophy (Reflex Sympathetic Dystrophy), painful neurologic disease that can be triggered by any sort of injury or illness, after which the brain malfunctions, sending constant pain signals throughout the body, essentially, shutting it down.

Jessica and her parents were told that her last hope for survival was an experimental treatment in Monterrey, if they wanted to try it.

They agreed, at that point they had nothing to lose.

“She came here very bad”

Here in the city, Fernando Cantu, assisted by Luis Barrientos, both anesthesiologists, had already treated 22 people who had suffered RSD like Jessica. Interestingly, most were foreign, from the U.S., UK, Canada, Switzerland and New Zealand.

They base their treatment in a drug called ketamine.

"Ketamine is a general anesthetic, but we administer it in very large doses to induce patients into a coma for five days," said Cantu.

The Ketamine coma works similarly to shutting down and re-starting a computer, after this period, the patient wakes up and there is a 'reset' of pain receptors in the brain, Ketamine is a potent antagonist of  the receptors that play an important role in 'Reflex Sympathetic Dystrophy’.

It is not approved in the United States to use this drug, in these doses, for this type of disease. Dr. Fernando Cantu, along with Dr. Luis Barrientos spent five years doing the ketamine coma study.

"It is a study. We can not say that it is a treatment, because there is no proof that it really works as such."

By the time Jessica arrived, Drs. Cantu and Barrientos had already been conducting the Ketamine Coma study for two years.

"Jessica came here in very critical condition. She had lived for five years in a bed, within four walls, she could not move, she could not wear clothes, she arrived wearing dark glasses because the light bothered her, she wore noise blocking earphones because she could not tolerate any sound without seizures, we could not touch her, she practically had not eaten in three years and was being fed intravenously for years before she came. Additionally, the disease had progressed to affecting her viscerally, her internal organs” Says Cantu.

Luis Barrientos remembers how bad it was.

"The touch of the sheet bothered her, and most impressive thing was seeing the extreme weight loss she had, in addition, the illness caused hundreds of ulcers on her arms and she could not move her legs at all. At that moment I thought that of the 22 cases we had seen so far, hers was by far the most serious. "

Arriving to Monterrey in August 2009, Jessica was not very hopeful, but felt she had nothing to lose.

“I was in so much pain, that the thought of undergoing a coma for five days didn’t bother me.”

"I know this is terrible to say, but honestly, at that time I just wanted to die, I could not imagine another day waking up feeling like I was on fire, I could not eat, I could not even hear sounds. I was by myself, in my room, in agony, all of the time. What type of life is that? At that point I really had nothing to lose, "said Jessica.

Her mother remembers what the doctors told her after seeing her daughter for the first time. “They told me Jessica was in very bad condition, and they asked me if I was sure that I would want to put Jessica through the coma, because they didn’t think she would survive it.”

"I told them she did not have a life and this was our last hope, and that if she died, it was God’s will, and so we decided to proceed." said her mother.

Jessica awoke five days later, in better shape.

"One step forward ... 20 steps backwards"

However, upon awaking from the coma, Jessica had amnesia. She did not recognize her mother, did not know why she was in Mexico and didn’t know what was wrong with her. She didn’t remember anything from her life at all.

"Those were definitely some of the darkest moments. For almost a month I didn’t recognize my own mother. I was so confused, especially because everyone around me spoke a language that was not mine!"

Finally, she recognized her Mom and began to experience slight improvements.

But not for long. After suffering another infection, her lesions re-emerged and she became paralyzed once again.

"The saying is always “one step forward and two steps back”, but this felt like one step forward… and twenty steps back. At this point I did not want to fight anymore. I told my mother to turn off everything—all of the machines and medications that were keeping me alive. I felt like I was the one person God had forgotten about."

Sarah remembers a particular night when Jessica was very sick, she called and spoke with her husband and he raised the possibility that it was time to stop treatment. But to Sarah, that was not an option. Seconds later she told her husband, as long as she lived, she would fight to save Jessica’s life.

Months later, Jessica was worse than she was since first arriving to Monterrey and she underwent a second coma.

Fernando Cantu says the more years a patient has RSD, the harder the fight is to treat it.

"The expectations (of improvement) for Jessica were poor. Everything was against her. She was at high risk because of the malnutrition, her body being completely overrun by the disease. The situation was serious, difficult, but I had no choice.”

The second Ketamine coma, in August 2010, became the turning point, after which things finally started to improve.

"Obviously afterwards, she had to receive continued infusions of booster doses of ketamine, and begin to have rehabilitation, and desensitization. We also started a nutrition rehabilitation program for her and she began gradually recovering more and more weight, regaining strength and finally started moving forward. But it was a difficult road to that point.”

“Not on my watch”

Jessica spent 16 months in Hospital San José, and slowly began to regain her strength. Finally, the time came when she was strong enough to travel and return to her parents' house, in Florida, although with frequent returns to Monterrey to continue her recovery under her doctor's supervision.

Once back home, her story began to spread, she appeared on TV in her country and even caught the eye of the presidential couple Barack and Michelle Obama, who came to greet her.

"I feel very happy because it was a hard job every day, for nearly two years be fighting the dystrophy and infectious processes and I definitely feel very happy to see Jessica now doing so well, she is regaining parts of her life, and she is now able to have the social and personal life these patients all aspire to have,” explains Fernando Cantu.

His partner, Luis Barrientos, sized the scope of this achievement.

"From a medical point of view is an important achievement because, as I tell Fernando, nowhere else in the world offers this treatment and Fernando Cantu is the head of all this. Monterrey is now a world reference in these complex cases. "

“They are both truly my heroes, my angels… but there are other heroes in this case” as Jessica turns to her mother:

"She never gave up on me. I remember that moment when things were really bad and she talked to my dad in Florida and told him that I was in critical condition, and I needed extra prayers that night. My father told my mom that I had suffered long enough, and the doctors had done all that they could do for me. Maybe, now it was time to stop treatments and let me go. My mom screamed: "are you kidding '?, not on my watch!" (' are you kidding?, not while I'm here! '). And hung up."


Dr. Fernando Cantu continues to work on the study of the use of ketamine to fight Reflex Sympathetic Dystrophy, along with Luis Barrientos and a team of specialists in Monterrey. Cantu is an anesthesiologist specializing in Pain Medicine and Barrientos is an anesthesiologist specializing in critical care. Both are proudly from Monterrey.

Currently, Jessica lives with her ​​parents, Sarah and David, and two sisters Katherine and Michelle, in Naples, Florida, overlooking the Gulf of Mexico. She is in physical therapy and returns frequently to Monterrey for treatment. Mind you, when she fully recovers, she has plans to return here to complete her medical studies, that she has already begun online. She wants to dedicate her life to researching the disease that she has suffered, and helping others going through it.

Jessica says that when she's not in Monterrey, the thing she misses most about the city are its mountains.

Ah! And she roots for the Tigres!

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!