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!
12 comments:
TERRIFIC NEWS . . . You go girl! Have a great day and love to both of you!
Renee Klatt
Wow, that is allot of moving! Congratulations to you, Jessica, for that accomplishment! That is pretty HUGE! God is good! It is nice to have a change of view.
We pray that you will continue to take these steps forward.
With love & prayers,
The Turners
Happy St Patrick's Day to you! Will you put on green PJ's in honour of this day? :) How about ordering some green food?
It was so wonderful to talk with you yesterday although brief. Dinner turned out wonderfully. My youngest son's favourite food is fish but it is not my husband's favourite so I often disquise the taste with other things. Yesterday, it was a fresh salmon (I do live on the west coast) and marinated it in ginger and soy sauce for several hours then BBQ. Carmalized onions in the rice made sure everyone would eat the brown rice so that they get their fibre. Dr Cantu would be very proud of me for making fish since his last comment to me was to eat less red meat (no problem there) and way more fish. I believe he said something about the fact that I live where it is easy to get. Good point! So, throwing caution to the wind - that is what we had! I made enough asparagus to have left overs today but Harrison finished htem off last night. Now I will have to plan a new green food for tonight's dinner. Being part Irish, it is important to stick with the tradition, even though it has been years since I was able to even think about it.
Now that was my story for today. I know that Jess likes for you to read to her from the blog and so I thought I better write something to pass the time. This time, I pictured myself sitting in your room on that now famous couch and just chatting with you both.
Miss you so much. Now I have to make my own coffee, too! lol
Hope today is sunny and warm and that you have a good day. Less pain for Jess and more daily progressions. I was up through the night and could not sleep, so God and I had a good talk about you and I asked him to watch over your family, to give you strength and courage for each day. I also thanked Him for the good friends, special doctors and blessings I have received both here and in Mexico. You were top on the list!
The sun is shining here so I can keep the socks off today and give the tops of my feet a break. Yeah!
Hope to talk tomorrow.
Dearest Jess and Gina, AMAAAAAZZZZIIINNNGGGGG!!!! Three cheers for the couch trip!!! Jess, you are proving that the human spirit, coupled with a real-deal faith in God, is way stronger than the human body!! The things you are accomplishing with His help are awe-inspiring. You are fighting to take back the things we tend to take for granted every day, and in your fighting, you are awakening a new appreciation for these things in me, and I suspect, others as well. These days are becoming the basis for your future. The strength and determination you are exercising and building up every single day will prove to you that nothing is impossible in your life when you live it with God. I learned in my life that true strength is earned, since that is the way that you can prove to yourself that you are strong and you can do it. You are earning it in many different ways through your monumental efforts, every single day you are taking the opportunity to stretch your boundaries and you are DOING IT!!!!! Through your actions and your faith you are saying to that mountain, MOVE!!! and it is MOVING!!! As you know, God never said to leave it to Him, that He would do all the work. When we work as hard as we possibly can, He meets us at that place and helps us carry our cross. I truly believe this. He is helping you carry that cross and you are moving that mountain. You are an amazing strong young woman who has an incredible story to share when we see you again. We are all blessed when you take your "small steps", because it is our privelege to watch God at work in your life and the world. Hang in there, Jess and Gina. BTW---Happy St. Patrick's Day!! Love always, Angel xoxoxo
Happy St. Patty's Day! Thought I would share a family favorite recipe for NEXT St. Patty's Day (can never have to many recipes)!
Green Mint Pie:
Pie Shell:
2-3 cups Chocolate Wafer Crumbs
6 Tbsp. Butter (melted)
Filling:
2/3 cups scalded milk
24 large marshmellows
1 1/2 oz Green Creme de Menthe
1 1/2 oz White Creme de Cocoa
(or you can just use a little green food coloring and some Peppermint Extract)
1 pint whipping cream (whipped)
Pie Shell:
Combine crumbs and melted butter together and press into 9 inch pie plate.
Filling:
Dissolve marshmellows in milk. Cool, When syrupy add the Creme de Menthe and Cocoa Liqueur (or green food coloring & mint extract). Whip cream and fold into marshmallow mixture. Pour into shell. Chill for 4-6 hours. Garnish with whipping cream and a Mint leaf.
Something to look forward to, Jessica!
I just thought I would let you know that it is Dr. Cantu's birthday on Sunday.
Yeah for Jessica to get on the couch? And was it as comfortable as you thought it would be? Did you fall asleep like your Mom on it?
Probably not as everyone was celebrating, right?
Thankful for another small- actually rather large- step!
keep up the hard work of small steps each day.
The sun is shining here today in Victoria also. Even though I had to work at 3 different stores today putting up Hallmark cards, I enjoyed the sun while I was out.
Kathy
That is terrrrrific news! That is a huge step! I'm such a cry-baby. That has brought such tears of joy to me!!! God is good. Always close to my heart...
--Gloria from TX
ps. If you need anything, my husband will be coming to TX the end of this month and will be returning to Monterrey the first week of April. If we can do anything for you, let me know.
Maybe your Mom will remember this song (Bing Crosby used to sign it):
An Irish Lullaby (Too-ra-loo-ra-loo-ra)
Over in Killarney
Many years ago,
Me Mither sang a song to me
In tones so sweet and low.
Just a simple little ditty,
In her good ould Irish way,
And l'd give the world if she could sing
That song to me this day.
"Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li,
Too-ra-loo-ra-loo-ral, hush now, don't you cry!
Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li,
Too-ra-loo-ra-loo-ral, that's an Irish lullaby."
Oft in dreams I wander
To that cot again,
I feel her arms a-huggin' me
As when she held me then.
And I hear her voice a -hummin'
To me as in days of yore,
When she used to rock me fast asleep
Outside the cabin door.
http://www.amazon.com/gp/product/B000W0CQXC/ref=dm_mu_dp_trk7
Gosh Jessica, it feels like these gals writing are right there in the room with you chatting and singing and eating Green Pie!
I'll bet Devon is saying, "Okay Jessica...you got that far out of the bed...keep escaping all the way back home!"
Francine is here, remember her..my nurse friend from Ohio that came over to visit you almost four years ago when we didn't know why you were so tired and could not get out of bed. Gosh the things your Momma did to help. Organic soup, juices, anything to help you feel better. We honor your Mom today as the Momma of the Year!
Francine is here for 10 days and her daughter Marla came too and we pray for YOU each and every day sweet Jessica!
We love YOU!
Nancy & Joe and the kids!
A little something to make your smile:
http://www.youtube.com/watch?v=g9f-6jygRJk
Tickling Slow Loris
(It is a cute furry little critter)
Dear Gina and Jessica
Thank you for your kind words..David also sent me a beautiful card. I pray for you all, every day, many, many times and before I open your Blog I ask God for Good News...I give thanks for the small steps and that they will continue so you can come home.
Gina your messages have been an inspiration for me during Don's illness. God wanted him home and Don will always be with me until we meet in Heaven.
Love ya...Kathy
Post a Comment