Jessica's Journey: Prayers for my sister Katherine :)

Monday, July 2, 2012

Prayers for my sister Katherine :)

Hi everyone!

I apologize for not updating more frequently! It has been a bit of a crazy time in the Stevens household!

I think it's safe to say the 'honeymoon' period that followed my homecoming has come to an end and with summer vacation being here and everyone being home, we are all trying to find and adjust to our 'new normal''. :)

As for me... I am feeling really well and have been getting into the pool and doing my water therapy as much as possible! When I first started going into the pool my energy and muscle strength was depleted in about 10-15 minutes and I would need a lot of time to recover afterwards.

Now, I am feeling a lot stronger and able to tolerate over an hour in the pool at a time!!!

I also have been enjoying going to the beach!

I LOVE the water-- especially the feeling of being able to move in ways I am not yet able to on land! It is incredible!! I honestly still have to pinch myself when I think of where I once was, in a hospital bed for 5 years, unable to even move or be touched... and where I am now-- in the water, moving, living and enjoying life! God is so good!

....I also have the best water 'therapists'-- My sisters :)

Speaking of my sisters...A big curveball was thrown to us last month... Katherine began feeling sick.

My normally vibrant, active sister, who takes awesome care of me, began instead laying in bed during the day, feeling fatigued and having gastrointestinal symptoms that continued to get progressively worse... instead of better, as time went on. We know from experience, that is never a good sign!

Three weeks ago she underwent extensive testing and was diagnosed with both Crohn's disease and Ulcerative Colitis.

Anyone who personally knows our family knows that our Dad has struggled greatly with crohn's for most of his life.

The doctors say her case is very 'rare' because of the way it presented and because oddly, Katherine's disease is in a completely different part of the intestine than my Dads. Her's is in her entire large intestine and colon, my dad has it in his small intestine.

Also, the dual diagnosis of crohns/colitis they say only occurs in 5% of patients... Again, Rare.

I am not surprised...rare...That is just how us Stevens' seem to do things... Never 'textbook' or 'normal'! :)

For now, she has started on a treatment regimen that seems to be helping a bit with some of the symptoms and she will be having an appointment with another specialist soon to get another opinion and hopefully rule out the possibility that she has another rare condition that her labwork is suspicious for. Please pray she does not, as this would be a much worse option.

Needless to say, it has been a crazy time here! My poor mom feels like she finally got me better... And now she has a new patient! A lot of people often say "Well, God only gives you what you can handle!"... I do not really believe that. I know a lot of people, my family included, who have been given exceedingly more than they can handle! What I DO believe is that God gives us the grace and tools to get through and learn how to handle whatever circumstances we are given. With Him, we can do all things! And in our family, there is no doubt that my mom is one of his most amazing "tools"! She is the glue that binds us. Please pray for strength for her and for her sanity! :)

Please keep Katherine in your prayers! For the healing of her GI system, wisdom for her doctors as they figure out the best treatment, and also for patience. She is 21 and just wants to go back to her normal life.

The challenges may seem great... but God is greater. If I am 100% certain of anything, it is this! After all... Look how far we've come!

Thanks for checking in!

God bless!
Jessica

"Don't panic. I'm with you. There's no need to fear for I'm your God. I'll give you strength. I'll help you. I'll hold you steady, keep a firm grip on you." (Isaiah 41:10 MSG)

**To post a comment, click on "comments" below***

11 comments:

Anonymous said...: Sweet Stevens Family our deep love and request for extra special healing and grace blessing to be bestowed on all of you as your journey continues with all the bumps and turns. Katherine for all your love you've shown to and for your family may you feel the same warmth of comfort as you heal and make quick progress. The pictures in the pool are marvelous and make me cry with joy and excitement.

Thank you all for sharing your lives with us. Please God speed your recovery and keep Mom's strength up as high as her wonderful spirit!!! xoxo Hola from Nancita & Jose'; July 3, 2012 at 1:15 PM
KatieRSD said...: Praying for your sister...and for you to continue with your recovery. Just an FYI...seems the link to autoimmune for RSD continues to be confirmed with all of us....; July 3, 2012 at 1:31 PM
Rosemary and John said...: Dear Jessica, Kathryn, Sarah, David & Michelle,

Thank you for updating the blog. It is truly bittersweet news.

First; Jessica, we are overwhelmed with your amazing progress! God is good and when we look back at your journey, it is hard to comprehend all the battles you have fought and won! Having your stoic Mom by your side was critical to your getting well. There is no greater advocate than your Mom. We hope and pray you continue to progress a little bit more each day in the water; a new best friend!

As for Kathryn, it breaks our hearts to know what she is enduring. Such a beautiful and loving sister and daughter, also in the prime years of her life. This had to be as emotionally devastating to her as it was physically. As parents, it is very difficult to imagine how this news affected your Mom & Dad. Talk about a blow out of left field. Yet, we know and we have seen that miracles happen. You are living proof of that. We pray God blesses Kathryn with a miracle; that healing begins in her body and that bad news ends for Kathryn and your family.

In the meantime Jessica, may God give all of you the strength to face each new day and challenge with the same Grace and determination you've exhibited over these past years.

You're all in our hearts and prayers,

Love,

Rosemary, John and Papa; July 6, 2012 at 6:51 AM
Anonymous said...: Hi Jessica! I've been following your blog and I am so extremely happy to see you that well! Congratulations girl! I live in Mty and my mom is a patient of Dr. Cantú. We love him so much! He is wonderful!
Do you have a Twitter account or Facebook?
Best regards! hugs!; July 11, 2012 at 4:21 PM
Anonymous said...: Girls don't let this go...Borrelia can share at least 40% of their genes with what ever they want to survive and hide, and I believe is the cause of both chrones and celiac. Borrelia alters the immune system to not recognize the infections and is in the cancer class not autoimmune. You already know how much damage it can do if not treated, but it is also the cause of other chronic illness.
http://www.youtube.com/watch?v=LRQ-NhEkLXU&feature=youtu.be; July 12, 2012 at 4:54 PM
Anonymous said...: Dearest Jessica, It is so good to see you enjoying the pool and the beach!! I am so glad that you are getting stronger with the water therapy- it's hard work but it looks like you are having fun too!! I am so sorry to hear about Katherine's difficulties and am keeping her in my prayers as well. Please give her a hug for me and say hi to your family!! Love always, Angel xoxoxoxo; July 19, 2012 at 8:48 PM
Fern said...: I am behind on your posts. When I spoke with your mom briefly, I knew of Kathryn's troubles. I have been praying and continue to cover your family in my prayers. Although we never seem to connect anymore, you are family to me. God will provide the tools and the leadership in this walk. How wonderful we can depend on that!
Love you; July 20, 2012 at 2:34 PM
Claudine P said...: Jessica,

It was quite awhile ago, you and your sister babysat my kids in Indigo Lakes. We used to live in the preserves . . . we were friends with your parents, but through the years have lost touch. Even though I am now divorced, I kept in touch with your family from a distance (I used to work at 5/3 bank, spoke to your dad) and then through your blog I kept up to date with your life. I cannot express enough how much you have inspired me and how amazing you and your family are. You guys have been through too much, and keep going strong no matter what. And now Katherine with Crohns/UC. I have Crohns as well, it is not a fun disease. In fact, I know where the bathrooms are in every place I walk into. I have been using Remicaid for 4 years now and it has been extremely helpful in keeping my Crohns in control. But nonetheless, Jessica, you and your family are truly amazing. With all that you have endured and gone through, you are all supporting each other and moving forward to live life!!!! And that is all anyone could ever wish for. Keep God close and live in the spirit as you have done all these years. I am so happy for you all!!!!! Blessed to have had you guys in our lives. Hopefully once again in the near future. Keep your inspiration going strong girl. You are amazing... much love and blessings!!!; August 10, 2012 at 12:59 AM
Aunt Carol said...: Katherine....You are in my thoughts each and every day..You are a beautiful and strong young lady. No one should have to endure what you are going through..You know that if there is anything you need...I am here for you Always...Your aunt Carol; August 12, 2012 at 7:52 AM
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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.