Sunday, December 26, 2010

A Wonderful Christmas!

Michelle and me on Christmas Morning

Good Morning!

I hope that everyone had a wonderful Christmas celebration yesterday! For me and my family, it was definitely the best Christmas we have had in many years!

There are hundreds of reasons that Christmas has always been my favorite holiday.

When I think back on my childhood Christmases I remember Christmas Eve dinner at my Grandma’s house and eating the most delicious Italian food, I remember driving around- looking at the beautiful Christmas lights, I remember arriving home late and being allowed to open “just 1” Christmas present- which undoubtedly, was always matching Christmas PJ’s for my sisters and I! I remember leaving out homemade Christmas cookies for Santa, and some carrots for his reindeer- (and being sooo excited to find them eaten the next morning!), I remember lying awake in bed with pure excitement and anticipation for Santa to come, hoping he would bring me everything I had asked for. But most of all I remember the great lengths my parents went through to make sure my sisters and I always had the best Christmas possible, filled with lots of special memories.

I don’t think that many people can understand what the holidays are like for someone who is ill, especially a long-term illness that involves tremendous amounts of pain. During the past years of my illness, Christmastime was always very difficult for me and my family. From smelling the delicious food that I could not eat, to the lights and sounds I could not tolerate, to being in too much pain and feeling too ill to even open my gifts on Christmas morning with my family... It was very hard to find the “Christmas spirit” while dealing with the reality of the situation, but I think I can speak for my entire family when I say that this year, the Christmas spirit was alive and well in Mexico!

This year I really felt like I was a little kid again, experiencing the magic of Christmas for the very first time! From the food, to the lights, the decorations and the music… It has been been so amazing just getting the chance to enjoy Christmas day with my family once again! The best part, for me, was seeing the looks on my Dad and sister Michelle’s faces when they walked in and saw me sitting up in my recliner chair waiting for them! They were both shocked and amazed to see the progress I have made since I last saw them over the summer!

This Christmas I am incredibly thankful to be alive, to be re-gaining my health, to have an amazing family who loves me, and to know that I am never alone- in anything. I am thankful for the opportunity to see and experience the holiday for it’s true meaning, through a completely different perspective than ever before!

I am most especially thankful to Dr. Cantu! Without him my family and I would not be here enjoying this day together.

I am thankful for answered prayers… for everything!

We thank God and praise Him for carrying us to where we are today!!

Happy Birthday Jesus!

Merry Christmas & Feliz Navidad to all!

In God’s Love,

Jessica (& the Stevens family)

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Thursday, December 16, 2010

Remembering my brother Charlie........

Hi to all~

Today is the 10th anniversary of the passing of my dear brother, Charlie Gelo @ age 40 after a long battle with Hodgkin's Lymphoma.

I miss him terribly but, the one thing I miss the most about him was his unique and funny sense of humor. Charlie was the type of person that lit up a room and he was the one you would want to have at your party because he always had a funny joke or story to tell.

So, in honor of him I'd like to present to you all his "funny" version of the 12 days of Christmas- the "Italian" `12 days of Christmas.

Sung to the tune of "The Twelve Days of Christmas":

On the first day of Christmas, my Italian Grandma made for me...

a creamy ricotta cheesecake

2nd Day- 2 Meatballs
3rd Day- 3 Calamari
4th Day- 4 Broccoli rabe
5th Day- 5 Rice-a-balls
6th Day- 6 Baccala
7th Day- 7 Fig cookies
8th Day- 8 Artichokes
9th Day- 9 Honey Balls
10th Day- 10 Linguini with Clams
11th Day- 11 Shrimp Scampi
12th Day- 12 Zeppoles


From a loving sister,
Sarah Gina

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Sunday, December 12, 2010

A Special Christmas...

Blessings to All from Monterrey,

Wow! I can't believe that Christmas is only 13 days away. It seems like only yesterday that we were celebrating a magnificent Thanksgiving celebration here in the apartment with Jessica's doctors! That was such a very special day - and probably one of the most amazing Thanksgivings Jessica and I have ever had! Just imagine Jessica being able to eat turkey and all of its trimmings for the first time in years - and then - just imagine being able to share that meal with the doctors who have been by your side these past 15 months - and better yet - Dr. Cantu (aka Dr. "Green Shirt") carving the very turkey you are about to eat!!! I think it is so hard to put into words the joy that I felt for Jessica and her doctors that day --- it's beyond words and a memory that will be forever etched in my mind and in all the doctors and their families who were here that night! Not only did God bless us with wonderful company - but I must say - the turkey was the Best turkey I have ever made --- and I have made many!!! We all had a good laugh, though, when Dr. Cantu informed us all that the turkey was so delicious due to his wonderful carving --- hahaha --- and not due to the 4 hours or so it took me to cook it!!! Oh well --- I think I will let him have the credit for the turkey this time --- he deserves it!!! Also, there was not a dry eye in the room as they watched a special "Thank You" video presentation that Jessica had made on her computer to honor them. It included special photos and songs of her journey so far. I know it goes without saying how very proud I am of my daughter - she makes me so very proud to be called her Mom!

And, now, Christmas is once again upon us, and oh, what a difference a year can make!!!

For all of you who follow this blog and faithfully pray for Jessica each and every day - thank you All and may God bless you and your families during this --- the most special time of the year - Christmas - the birth of our dear Lord and Savior Jesus Christ!

Last Christmas, as you may recall, was a very difficult time for Jessica. She had been experiencing many difficulties post the coma, including major infections and the neurological problems she was experiencing with her eyesight --- she couldn't see --- her visual field was plagued by green static vision. That, coupled with the intense, unbearable pain, fevers, lesions, tubes, name a few ...... made it a very stressful time to say the least! But, I do remember the Christmas miracle last year as her sight was restored after Dr. Cantu put her back in the ICU. They say that God helps to erase those painful memories in time, and, I am grateful to say, I try not to think and remember them as much as I can. But, I do think that it is important in life to remember where you have been. You have to reflect on the road traveled so far, to realize how very far you have come and how, with faith and prayers and the love and grace of God, and, in Jessica's case, amazing doctors, ALL things are truly possible!

We, as a family, are so looking forward to this Christmas! As I write this blog, Jessica is listening to Christmas music --- something she hasn't been able to do for a number of years due to her extreme noise sensitivity! Last night, we were able to watch a movie on TV called "It's A Wonderful Life" - something she also hasn't been able to do for the past years due to her photo-phobia - or extreme light sensitivity! I am cooking up a storm! For those of you who know me, I love to cook. It is my hobby and one that I enjoy so much --- it is a great stress reliever for me. It is such a pleasure to be able to cook for Jessica once again, and for her to be able to enjoy eating again - another thing she can now enjoy once again since she no longer has her J-feeding tube in her intestines! This morning, we had such a good laugh, over something so silly --- but --- even that is a milestone for us! You see, she can now laugh again, because, she is in so much less pain than a year ago! ALL of these "little" things are really "Big" things for patients like Jessica, who have experienced pain and sickness on a level that, even as her Mom, I can never, ever, really fully understand!

In just under two weeks, Jessica's Dad and sister Michelle are coming for Christmas. Katherine will be spending Christmas with her Grandma and my family in Marco Island and instead will be coming to Monterrey in January to help Jessica and I celebrate our birthdays.

It goes without saying, but, I believe that this Christmas will be a very special one. For Jessica, she will be able to enjoy all the sights, sounds, and tastings of Christmas - something she hasn't been able to do for a number of years. For me, I can honestly say that I will be able to "breathe again" this Christmas and just be happy in seeing Jessica happy again!

Remember that these are the special times of Christmas. A time when we reflect on the true meaning of Christmas - as we celebrate His birth - and all of its magnificence and splendor. It is because of Jesus that we have life! As a Christian, I know, that thru Him All things are possible and All things are New once again.... I know this, Jessica knows this.......our hope is that You know this as well!

Merry Christmas --- Keep Christ in Christmas!!!

In God's love, always,
Sarah Gina (Mom to 3)***

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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!