Sunday, January 24, 2010

"Pieces" of the Puzzle

Hi to All,

To view Jessica on Fox TV, Click on Link Below:

http://www.youtube.com/watch?v=PW_vstm0bS8


I will have an update on Jessica tomorrow.


Today is a happy and a sad day. It's happy in that today, our fellow RSD patient in Room 844 is finally going home. Justin Brown and his Dad left the Hospital San Jose Tec this morning to return home to Pennsylvania. Justin will be returning to the states to continue his road to recovery! Godspeed Justin & Rick!

Justin's Mom Joan and Dad Rick were the first persons I met when we arrived here in Mexico. I will never forget how happy I was to know that there were fellow "americans" here as well. Because they had already been here for a few months, they knew all the "ropes" and were so helpful to me in those beginning days on the 8th floor. They were the ones I went to for guidance and strength, especially during those days in the coma and in ICU.

Justin became known as the "Ice Pop Boy". This was the name that Jessica had given him because he was always asking for some of our ice-pops that we had brought from home. These are the ice-pops that come in a long plastic tube filled with liquid that you put in the freezer and they come in different flavors and colors. They became a favorite for all the coma patients on the floor as well - especially when word got out that we had them! We were glad to share them with all!

Yesterday, I presented Justin with the handmade "Ketamine Coma Bear" that I made as a farewell present to him. It is something that he can look upon to remember where he has been and to realize how far he has come - Enjoy the bear Justin!

I would like to take this opportunity to thank Rick Brown for ALL that he did for me to make my life and Jessica's life easier while here in Mexico. Words cannot adequately say "Thank-You" for all the help he gave to us. From going to the store, to bringing my laundry to the laundromat, to buying the coffee - and to most importantly - always being there to talk to as well! After the Emmanuels - Devon & Cathy - left, Rick became my special "messenger" in more ways than one - so THANK YOU - again Rick - for everything!

Also, let me say this to all who are battling diseases like RSD, Lyme, Cancer, Crohn's, etc. When you are faced with illnesses - it affects the patient in a very profound way physically. As their caregivers - it affects us in a very profound way emotionally. We are here with them 24/7 - trying to tend to their physical needs as well as their emotional needs. We are the ones that stand beside them and offer unconditional "love", "support", and "encouraging" words, when we ourselves are the ones who need these "encouraging" words at times as well!

I guess what I am trying to say is this: I have come to realize that when you are confronted with a major illness in your life or the life of your loved one - "We" - the caregivers, the family, the friends, the doctors, the nurses, EVERYONE, become a part of the "puzzle". Yes, we all are a "piece" of the puzzle! And it takes all of these "pieces" - all together - to finally complete the puzzle - and make it whole again! Everyone plays a "part", we all are a "piece" to the puzzle! The ultimate goal is to find that last "piece" of the puzzle --- the"healing" piece! It is then and only then that the puzzle is complete and all of the "pieces" that helped form that puzzle come together as one!

So, Godspeed to Justin, to his Dad Rick, and to his Mom Joan and brother Chris - who are waiting for him with open arms - to welcome him home! Let's hope that his final "piece" of the puzzle - his "healing" will be revealed really soon!!!

Here is a Poem for Justin, Jessica, Devon, Fern, Elena, Debbie, Lindsay, Kaci, Irene, Linda, Emily, Patricia, Shannon, Sue, Mary, Suzanne and everyone else who is battling this disease:

If you don't know where you are going,
then how will you get there?
VISUALIZE!
Make pictures in your mind.
See the destination.
Imagine your arrival.
Dream in perfect detail.
See yourself the way you want to be when you arrive.
See yourself arriving.
Make yourself a road map and study it every day
until you know the way and the destination by heart.


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

***To post a Comment, CLICK on Comments Below***

19 comments:

Fern said...

Thanks for the poem. Too true!

I imagine you are very happy for Justin but very sad for yourself. Part of the family is leaving and you are there to hold down the fort for us. I know thre is another family arriving soon and they will need your guidance as well. It is great that we can all be a support to another at different times in our lives and I was glad to read how much Rick meant to you. Just knowing that you had some friendship and support from their family while you have been down there, is a real blessing frm the Lord. He puts people in our path to be there for a short or even a long time and it is often we can all be used if we allow it. May you feel surrounded in love, cherished and supported today and everyday.

Hopefully, I will get a room close to you and will see you in a little over a week's time. I must admit it makes me feel better to know that you will be there when I get there. Familiar faces make all the difference and it is always good to see friends no matter the circumstances.

Look forward to hearing how things are going and sending loving and healing thoughts to you Jessica. May you feel God's embrace ever more acutely today and may you feel strength in that!

not a minx, a moron, or a parasite said...

God bless you all! Your thoughts on being puzzle pieces are spot on. Today the second reading at Mass was about being the body of Christ, and how we are all parts of that body that need each other. We all have our part to play for each other and for God. Take care. xo

Anonymous said...

How wonderful that Justin is heading home!

Even during very difficult times, special bonds are being made.

I guess you will now be the ones to show the "ropes" to new families. :)

By the way, I liked your poem.

We pray that all RSD patients will "arrive" at their destination.

May God continue to give you great strength as you care for your sweet Jessica. May He heal Jessica very soon.

With love & prayers,
The Turners

Anonymous said...

I little something to encourage you...

Here is a video of Kids singing our "God is an Awesome God". It picks up a little later (tempo and harmony). It is sweet!

http://www.youtube.com/watch?v=HPa-RzKQ7hc

Debbie Caloutas said...

Dear Jessica and Mrs. Stevens,

Thank you for the beautiful poem. Helen Keller said, "The best and most beautiful things in the world cannot be seen or touched...but are felt in the heart." and Dorothy Bernard said, "Courage is fear that has said its prayers."
I think of these quotes, and I think of both you, Mrs.Stevens, and Jessica. You are brave, determined, and so admirable. Your tiresome faith and unshakable devotion inspire me, and I stand in awe of both of you.
Prior to becoming so ill four years ago, I was a teacher, and I LOVED my students and my career; we take so many things for granted when we have our health. Look at how you have put your entire family on hold, and better yet, look at how everyone has rallied together! How wonderful it is each time I read a blog about the love among your family members and the unselfish devotion to one another. Unless people have had an experience like yours, they have no idea what you are living right now. You are in my prayers daily.
I think of my "new" favorite quote, "We make plans, God laughs." It is so true! Jessica, remember that persistence can conquer all things, and with your faith in The Lord, how can you fail?
Mrs. Stevens, as I said yesterday, you are what all Moms should be; with your devout faith in The Lord and dedication to your daughter's recovery, anyone who reads this blog can see that impossible is not in your vocabulary.

"The sky's the limit when your heart is in it."
God Bless,
Debbie Caloutas

Anonymous said...

at Henry Viscardi School for the Physically Challenged, Long Island, NY, the phrase is "Failure is not an option".These students struggle each day and, like you, they have the courage and the strength from God to continue on the road that God has led you.
At Mass today, as each week I had thoughts of you both and our many parts and yet we are all ONE.
our prayers are with the Stevens Family.
Still awaiting our new grandson. Barbara is exhausted. Jessica, do you remember how Barbara took care of you? Thanks for trainging her to be a good mom.
Linda in saratoga

Anonymous said...

Make yourself a road map and study it every day until you know the way and the destination by heart.

John 14:4-6

4You know the way to the place where I am going."

5Thomas said to him, "Lord, we don't know where you are going, so how can we know the way?"

6Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me.


Matthew 6:21
21For where your treasure is, there your heart will be also.

Anonymous said...

Hi Jessica and Mrs, Stevens,

Thanks for the poem. Really, it is so true. I can't tell you how many times my Mom and I sat in our room in Mexico and kept saying, "This is our ultimate goal, we will get there." Sometimes so much I wanted to give my Mom a well placed punch in the arm. :) After all, when confined in a room after so long, you know sometimes the going over and over and over the same thing does get a bit old. ;) But having said that, Mom was the reason and one that ultimately kept me going. I couldn't have made it through those difficult times with out her. When I got tired of fighting, she was there to help pick me up, get me re-focus, and back on track. As you said mrs. Stevens, there are so many that have become "pieces" of my puzzle and I am convinced Mom has several.

Keeping you in my prayers always! I have been meaning to sit down and write to Jessica and let her know what is going on around here, but after spending almost 7 hours this weekend on math homework, my time seemed to get away from me. :) Expect an email soon!

Love you guys.

In HIs love,


Lindsay

Anonymous said...

Sarah Gina & Jessica,
Thank you for the encouraging poem. All of us wouldn't be where we are at today without the strong willed mothers and fathers we have fighting this battle beside us. You are a true testament to that. I know Jessica will look back ten years from now and give you a big hug and say thank you. Hang in there and remember, this process is one day at a time. Lots of prayers and love from FL.

Suzanne Hyatt & Family

Anonymous said...

As someone who is afflicted with a chronic disease (crohn's) I can say that without it I would not be whom I am today. Well you might say a duh- But what I mean is that with sickness you will either run to God or run from Him. I chose to run to Him. And ,as a result, He has used me mightily in spreading his word.

Without this illness, I doubt that would have happened. Sickness takes away your control of life. And when we lose control then God has an opportunity to take control if we let him. And if we let Him take control then he will fashion us to be who he wants us to be in Christ.

Yes it does put a toll on those we love and our care givers, but in the end I think it is worth it.

David

Michelle said...

Jessica,

as a daughter of my dad who is sick and a sister of my jessica who is sick..i think i know more than anybody what it is like!! but i am gonna get to my point. my point is jessica. Jessica, God never promised you or me or anyone a peachy cream life. He never promised us a happy or healthy life either. But God did promise that he would get us through the tough times. And God is doing that right now. God is getting us through the though times. i love you Jessica. And i love you mommy!!!

Love,
Michelle

Anonymous said...

Jessica, I had the opportunity to transport Justin and Mr. Rick to Mexico. They mentioned they knew you. I so desparately wanted to go see you at the hospital but was not allowed......we were sent on another flight :( They are such nice people! I pray that you are getting better every day! Crystal

Anonymous said...

James 5:17

17Elijah was a man just like us. He prayed earnestly that it would not rain, and it did not rain on the land for three and a half years.

Anonymous said...

James 5:11-12

11As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about.

The Lord is full of compassion and mercy.

Anonymous said...

http://www.youtube.com/watch?v=MS93Q4jQAO0

Amazing Grace by 2-year Old :)

This is cute!

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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!