Hi to All,
This blog may seem silly today, but for Jessica it is so very special. You see, today, September 30th, is Molly's birthday. Molly is Jessica's pet - her dog - her "perrito" (this is how they say "small dog" in Mexico)! Molly is a yorkie-poo. The picture that you see on the top right of the blog is a picture of Jessica holding Molly in her Halloween costume on October 31st, 2005 - four months before Jessica starting feeling sick.
For Jessica, Molly is such an important part of her journey back to wellness. You see, for the past 3 1/2 years, Jessica has kept a picture of Molly as her screen saver on her computer. It was the first thing she would see in the morning, what she treasured seeing during the day, and the last thing she would see before possibly falling asleep at night! If you ask Jessica, one of the first things she wants to do when she is better, is to be able to play with Molly again! To be able to "really" hold her and "hug" her! To see Molly do her famous "break-dance" that she does only when she asks. To see that famous tail of hers go round and round in excitement and feel the gentle breeze that comes from it because it is almost like a propeller of an airplane when it wags! To feel her "lick" her booboos away, as only a dog can! These are the things that Jessica can't wait to experience again with her fateful companion "Molly".
Molly came to us one Christmas morning in 2001. You see, our girls, Jessica, Katherine and Michelle, had been wanting a dog for quite some time. They had asked my husband David and I many times for the "blessing" of a dog and it was me who always put it off. I would say things to them, like all parents say, things like: "You have to be more responsible first, you have to understand the work and care that is involved in taking care of a pet, it's expensive to have a pet, etc.etc.etc." Then in 2000, my beloved brother Charlie passed away from Hodgkin's disease. He had fought the "good" fight for nine years, and even after my being his stem cell donor, his healing was not meant to be here on earth, but in heaven above! It was a very sad time for our whole family. My mother, brother, sister, and I, and all of our family were devastated. It was then, during the year 2001, that our children once again revisited the idea of wanting a pet and really pushing for it. They said they wanted nothing else for Christmas - only a dog - and if we could get that for them, they would be so happy!
I guess I can honestly say that for me, because of the death of my brother, my heart softened a bit to the idea of getting a pet for the girls. For my husband it had always been a "no-brainer". He had always had pets growing up; in fact his pets were not really pets, but an extension of the family! So, we made the command decision to get them a pet for Christmas and surprise them with it on Christmas morning and for our youngest girls, who still believed in Santa, to tell them that Santa had brought the dog to our house especially for them!
Molly was chosen or should I really say, God chose Molly for us, two weeks before Christmas. It was indeed Jessica who chose Molly from a batch of dogs at the local pet shop. She saw her in the "crowd", asked to play with her in the special "room" where they allow you to do this, and from the moment she was put in Jessica's arms, there was no turning back! Molly was ours, or should I really say, Molly was "Jessica's" and would be arriving to our brick house - #90 - -- her new home!!! She arrived that Christmas morning, wrapped in a baby blanket, nestled in a big red basket - it was a site we will always remember! The girls still say that that Christmas - the one when we got Molly - was the best one by far!
The significance to this story is that, for Jessica, her love of that pet, has been one of the things that has kept her going in this quest to feeling and being well again. Her desire to play with that little dog or "perrito" once again - that "little" pet that she loves so very much --------
So hug your pet today - because sometimes it is the "little" things in life that come to mean so very much....
All our love,
Molly's family,
Sarah Gina, David, Katherine, Michelle and JESSICA*
UPDATE:
P.S. The nuero-opthomalogist is arriving today to evaluate Jessica's vision, as it still is not well and she is still experiencing the "static" vision. I will keep you posted. Also, a GI consult is coming today to review the intestinal ultrasound that was done yesterday in order to determine the cause of the contracting pains Jessica is experiencing every 3-5 minutes in her intestines. Every day is a struggle, but in the end we know it will all work for God's good and for His plan! If all goes well today, she will probably receive ketamine booster #3 tomorrow.
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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 illThe 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 lesionsJessica'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 campFour 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 rashDuring 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. KirkpatrickUpon 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!
7 comments:
Gina and Jessica, I'm sure that Molly is waiting by the door for her beautiful Jessica to come in and play with her. She will wait as long as it takes, as will we. Love Bonnie and my daughter Kirsten says she can't wait to meet this incredible girl. She sends her good vibes to Jessica with love
Our family has had the pleasure to witness that BREAKDANCING that Miss FAMOUS Molly performs!!!
What a wonderful day it will be when the WHOLE PACK is BACK together!!!
Love from the Sustersics!
Joe Nancy and Mr. Tinker (Molly's playmate)
oh molly moo, she is really the best dog ever and i love her. jessica molly wants me to tell you that you are the best owner and that she does not like stinky daddy. molly moo cant wait to see you again she loves you and so do i.
Hi Jessica and Mrs. Stevens,
I know how much the "little" things mean. It is amazing how much of these things are such a special thing to people who have had so much taken from them.
I have been thinking a lot about you guys (and of course praying), and I heard a song on the radio while I was driving home from PT today. Yes, and I was driving, not my Mom, me. After years of being so sick, and having so many docs thinking that I would make it to see my 25th birthday, I was driving. I immediately though of you guys when I heard this. The song is called "What Faith Can Do" by Kutless. Here is the link if you guys want to listen to it. It's awesome. I have also included the words below because I know Jessica has a tough time with noises.
http://www.youtube.com/watch?v=DTr8mB--sZw&feature=related
WHAT FAITH CAN DO by Kutless
Everybody falls sometimes
Gotta find the strength to rise from the ashes
And make a new beginning
Anyone can feel the ache
Think it's more than you can take
But your stronger, stronger than you know
Don't you give up now
The sun sun will soon be shinning
You gotta face the clouds to find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling...
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word,
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step, out on the water
But it'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way if you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling...
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling...
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise...
I know how difficult it is to see your world falling apart around you and feeling so helpless. We prayed for months that God would show us something to hang on to. Some hope to be seen. For a long time we didn't get that. So many people told us that there was no hope, no chance of recovery. I guess that is the awesome thing about our God. He doesn't have limits. He isn't limited to what doctors are.
I look back on all the years of suffering, and how clearly I can now see what God was doing during certain instances in my battle. Though his ways are certainly not our ways, his love and his strength is perfect. HE is strong enough to beat whatever "odds" there may be. To him, odds mean nothing.
I've seen to miracle God has performed in my life. Some that have "explainations", many that don't. As the song says:
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling...
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
I love you guys and you are always in my prayers.
Hang in there Jessica. Miracles do still happen.
Love In Christ,
Lindsay Spengler
Molly had a great birthday. Michelle made her a birthday cake made from treats and we sang happy birthday to her.
We must also mention Chloe our other Yorkie. She is the grand daughter of Molly.
They can be a handful together but they hold a special place in the Stevens household.
Hurry home Jessica and Mommy and make the family complete again.
Love
David
I love you Jess! Stay strong, I know Molly can't wait for you to get home so that you can play!!!!!
XO
As one whose dog was very glad to see me come home I know that Jessica and her pal will take up where they left off. That unconditional love and devotion is truly a blessing from the Lord!
You have been often on my mind and I do miss our short visits while I was there. I am still not walking and relying on the kindnesses of friends to get me around now that Theo is back at work. Had my first local booster on Monday. Due to its lateness, I have been suffering more and hope that with time we can get a handle on it again. We leave for our follow up in Tampa on Saturday.
You have both been in my prayers so much. Please email me and keep me posted on how the GI doc stuff works out as well ass the ophthalmologist.
May today be a very good day for Jessica and for yourself. Please pass my greetings on to Jessica and give her a very gentle virtual hug from me.
Fern
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