Sunday, September 27, 2009

UPDATES: Jessica / Fundraisers / How to Leave Comments

Hi to All,

Update on Upcoming Fundraisers:

October 3rd - NAPLES, Fl.
Fred's Diner
2900 Immokalee Rd. Naples, Fl.
RSVP - ASAP - (239) 431-7928
or e-mail Nancy @ uareworthit @aol.com
*Dinner/Live Music/ Many Raffles*
$20 Donation
Donations can be made to: Jessica's Journey Savings Club
and sent to : Carol Biron - 14505 Indigo Lakes Circle
Naples, Fl. 34119

October 10th - GARDEN CITY, NY
Garden City Fire Dept.
Stewart Ave. Garden City, NY
RSVP - ASAP - e-mail-BCastoro @gcfdny.com
*Light Food/Refreshments 6-11 PM*
@Firehouse-50/50 Raffle/$10-arms length of tkts $20 donation @ door

Donations can also be made to: Jessica's Journey Savings Club
and sent to: Garden City Fire Department-c/o Asst.Chief Castoro
P.O. Box 251- Garden City, N.Y. 11530

UPDATE ON JESSICA:

Jessica's "vibration" in her body is slightly improved today, but the "static" vision or hallucinations still persist. The neurologist has put her on a medication that may be able to reduce or hopefully start to eliminate the problem all together. This would be very good as it is very troublesome to Jessica. Also, her left leg continues to be able to move side to side after the ketamine booster and the right toes move better as well. We are thankful to God for all improvements, whether big or small, and we once again thank you all for your continued prayers and support.


For those of you who will be attending the fundraisers, either in Fl. or NY., some of our family members will be there!
Jessica's sisters Michelle and Katherine will be helping out, as well as her fireman Dad at the NY fundraiser being held at the firehouse!
At the fundraiser in Fl., Jessica's Uncle Vinnie, Aunt Carol, Grandma Josie, Judy, Anthony and cousins will be there as well!

****My hope is that I will be able to SKYPE from Mexico during these events to say hi to all and to thank everyone for all you are doing for us!****

All my love from Mexico,
Sarah Gina
(Jessica's Mom)

HOW TO LEAVE COMMENTS:
It has come to my attention that it has been difficult for some to leave comments on the blog --- Here are the instructions:

Click on Comments Below*
Type your comment in the appropriate space provided. If you wish, leave your name after the comment is typed in the box.
Scroll down to Choose an Identity
Click on Anonymous (You dont need to create an account)
Press Preview to check your comment
Press Publish Post to Post Comment
You are done and thank you all for your comments- I read them everyday to Jessica!!!

130 comments:

Anonymous said...

Jessica and Gina,

Today is Sunday, a rainy one in Saratoga, Ny. As always, we are thinking of you and praying that each day there is some improvement. Roger and I will not be able to attend the GCFD function but we hope to send a friend with our donation, love and support. Actually, we will be in Cancun Mexico. I was so hoping that you were close to Cancun because I would have love to have given both of you hugs in kisses in person. Sorry that they are not that close and it is a big ordeal to fly from Cancun to Monterrey.
Please let us know if we can send you snail mail.
May today's rain wash away some of your pain.
love from Saratoga NY
Linda

Anonymous said...

Jessica, Keep moving that leg babydoll. I look forward to the day that you will use those legs to dance. God bless and keep you both in his embrace. Love, Bonnie

Anonymous said...

Gina- My daughter(Nicole) and Michelle are friends and have been spending much time together. Through her I have been able to see your postings and wanted to say that I think of you and Jessica and pray for a full recovery. I wanted to say that you are a wonderful mother and it is easy to see that with your faith and determination Jessica will get better. We recieved the word on the fundraisers for Jessica.. she is greatly loved...and we will send our support. with love from garden city, maria

Anonymous said...

Shake A Leg Jessica... as you move closer to escaping!!!

Little Private Joke there!!!
Nanc

Anonymous said...

WOW...11,462 visits to the blog...now that's a LOT of PRAYERS!!!

Anonymous said...

May God continue to heal Jessica. My thoughts and prayers are with her and your family. I too suffer from RSD, no where near the severity of Jessica's. My heart goes out to her and I will continue to keep all of you in my prayers.

Anonymous said...

Hi Jessica and Gina

We are all very happy that the terrible side effects of the medication are starting to leave you. We are thinking about you all the time and continue to pray for you and your family.

Ashley, Kevin, Paula and Ray

Aunt Carol said...

Wow...I've read both Saturday and Sunday's blogs. The day will come when we will return to the Marco Island Beach to collect those beautiful shells together. I have not had the courage or the energy to collect any shells. I am waiting for you and Jessica to return.. The story about "Dr. Rainbow" is truly amazing. There are forces greater than we can imagine.,..Jessica will one day relay these stories to her patients as a comfort to others. I am hoping that Dr. Rainbow will contin ue to bring comfort to Jessica so that she can return home real soon. I miss you both so much., Love you... Aunt Carol

Anonymous said...

Dear Gina and Jessica,

I have been following your notes daily and want you to know that your entire family have been in our prayers constantly.

you are an amazing mother, wife, sitster, daughter and friend

gretchen and friends at resurrection

Anonymous said...

Gina and Jessica. Our thoughts and prayers are with you every day. We will be sure to light a candle for the both of you this Sunday.
Gina you are such an amazing mother; Jessica has been truly blessed to have you fighting so hard for her!
We will keep praying for strength and an end to this long, hard journey. We hope today went well and the answers are ones you wanted to hear.
We can't wait to see you all at Pat and Fred's house again; happy and healthy with this behind you.
Fondly,
Karen, Dan, Michael, Nicholas, Daniel, Brianna and Julianna Ventricelli

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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!