Friday, July 29, 2011

My special little friend

Last year around this time a very special little boy (and his awesome family!) came into my life.

His name is Juan Pablo and he is 2 years old.

Last June one of our Monterrey friends, Sylvia, had gone to a funeral for one of her neighbors. She was so moved by the sermon that the priest had given that she felt compelled to go up to him after the service and talk with him. She told him she was on her way to visit a friend who had been sick in the hospital for a long time (me). The priest asked her if she would like a ride, because he just so happened to be on his way there too.

She accepted his offer and when they arrived at Hospital San Jose, the priest, Father Carlos, decided to come up to the 8th floor with her to meet mom and I and to pray with us.

It is a visit I will never, ever forget.

I was feeling very discouraged that day. My discharge plan from the hospital had fallen through… again… because I was sick with yet another infection. I was feeling miserable. Father Carlos spent time listening to me and than prayed for me. He told me that God knew what He was doing, even if I don’t ‘get it’ right now. This delay in leaving the hospital was for a purpose… he assured me, His answer is the right answer and His timing would be the right timing.

I definitely needed to hear that message and I know God used him to speak it to me that day, but it is what he told me next that will make me remember the visit forever.

He said that the reason he was visiting the hospital was to see a little boy who was in the pediatric ICU on the 4th floor.

He then shared with me the story of this brave little boy, who had spent most of his nearly 2 years of life, fighting for it, in the hospital.

This is Juan Pablo. He's 2 and he's adorable!

Juan Pablo was born with Metatropic Dysplasia, which is really rare form of dwarfism. It’s so rare, in fact, that he is the only known case of it in all of Mexico!

He is the youngest child of his amazing parents Roger and Marus. They have 3 other children- Paulina, Roger Jr. and Marianna. Metatropic dysplasia is a genetic condition, however, no one else in his family has it.

This type of dwarfism causes major problems in the musculoskeletal system such as limb deformities, joint contractures and scoliosis. Juan Pablo’s spinal curvature is so extreme that it has compromised his respiratory and digestive systems, leaving him dependent on a ventilator to breathe and on a feeding tube to eat.

The top specialist for this disorder is Dr. Mackenzie at DuPont Hospital in Delaware, where he has traveled to for spinal surgery and follow-up care. He will probably need to have numerous surgeries there in his lifetime.

Ironic how Juan Pi has to travel to the US for his treatment, and I have to travel from the US here.

He is in many ways my kindred spirit… We both have spent a lot of time in hospitals far away from the comforts of home.

I had a huge stuffed animal bear in my hospital room, a gift from my dad, that I called “Monty” (short for Monterrey!) I told Father Carlos that I wanted Monty to go down in Juan Pablo’s room. I know how lonely, long and scary each night in the hospital is and I knew Juan Pablo needed him more than I did. After all I was 22... he was only 2!

Juan Pablo's amazing family with Monty

The next day Juan Pablo’s family came up to my room to get the bear. Hearing what their little son has gone through in his short life… wow. Talk about a wake up call! They are such an incredibly strong family.

From that point on whenever I was having a rough time I just thought of Juan Pablo and I got the strength to get through it, whatever it was.

Juan Pablo's family's nick name for him is "Juan Pi"-- they also call him "Cham Pi"-- short for Champion. And that he certainly is!

Juan Pi has been back in Hospital San Jose for nearly 1 month now and is still unable to be transferred back onto his regular home ventilator without being unable to get enough oxygen and having episodes of tachycardia. His liver is enlarged. His lungs are full of secretions. He is sick.

I know those words that Father Carlos spoke over me are true-… There was a purpose in that delay for me—and I know part of that was so I could come to know Juan Pablo and his family. I consider them a part of my own and I love them so much.

God has a plan for Juan Pi, I am sure of it. However, right now the thought of him laying in that ICU instead of being at home with his loving family really breaks my heart. I wish there was something I could do for him… but I think the best thing I have to offer is prayer.

So I’m writing this to ask everyone to please keep him in your prayers too. He needs to get better, he just has to…

Keep fighting little Champion, You are so loved.

Thank you for praying for my special little friend.

…God’s timing is always the right timing and His answer is the always the right answer…

In God’s love,


PS- Today is Juan Pi's amazing father, Roger's, birthday! Happy Birthday Roger and thank you for being such a great example of unconditional fatherly love to your son, even under the most difficult circumstances.

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Monday, July 25, 2011

A Special Visit :)

On Saturday Mom and I had a special visit from Kerri Jarvis and her wonderful family- dad Mark, mom Kathy and sister Erin.

Kerri is a fellow RSD Ketamine Coma patient and she is back in Monterrey for the removal of all 4 of her wisdom teeth and for ketamine boosters.

Even though our parents had spent a lot of time getting to know each other in the hospital, Kerri and I had only met once, briefly. On the day she was being discharged from the hospital she was wheeled into my room and we shared our common ‘battle’ stories with each other. At the time she was still very weak and couldn’t sit up for very long.

When Kerri WALKED into our apartment yesterday, I couldn’t believe how different and great she looked! Yes, she is walking again! (and she has a really cool pink cane!)

Kerri’s mom reminded me that on that day we first met last year I was celebrating having just eaten my very first french fry in years. I was so happy and the Jarvis family enhanced my excitement by rejoicing with me in that milestone.

Tonight we made and ate homemade pizzas together! We also ate lasagna! And cake!

The day was extra special because it was also Kerri’s birthday.

Mom made her an oreo cake with vanilla frosting and I decorated it. It’s all red and green sprinkles in honor of Mexico! I call it a ‘Mexican Explosion’ cake. :)

I know that spending her 23rd birthday -in Mexico- for medical treatment- is definitely not quite what she had in mind, but I was so happy to get to be a part of it and to spend time with her—this time sharing health, happiness and funny stories instead of battle tales.

We serve a God of miracles!

Kerri’s dental surgery will be tomorrow afternoon. There is power in prayer. Please join me in praying for wisdom and guidance for Dr. Cantu and her oral surgeon, that the surgery goes smoothly, and most importantly, that she does not have an RSD flare up. Pray for strength for Kerri and her family today as they wait and prepare and for her continued and complete healing.

She has come so far and I know she is in the best place possible- in the safe and capable hands of God & Dr. Cantu.

Thanks for the prayers!

xoxo Jessica

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Saturday, July 23, 2011

Sliding Doors.... & 90,000 views of the blog!!

Earlier this week I watched a movie a friend had lent me called "Sliding Doors." Its an older movie from the 90s, but it was new to me. (I know, I must live under a rock or something..?) I had no idea what the movie was going to be about or how it would impact my thought process that night as it did.

As the movie starts out we see the main character Helen (Gwyneth Paltrow) living a comfortable, great life in a nice apartment in England with her author boyfriend, Jerry, (who, unbeknownst to her, cheats on her everyday while shes at work...)

She goes off to work that morning like any other, but arrives only to be told that she has been fired. Bummer.

So she packs up her stuff and heads to the train station to go back home, but just as she is approaching the train the sliding doors close right in front of her and the intercom announces that the next train is not for another hour.

Obviously this is not Helen's best day. We've all been there too...

The rest of the movie parallels Helen's life in two scenarios...The one above, where she misses the train and the second in which she arrives just a few seconds earlier and gets on.

The way her life plays out in each are in complete contrast with each other. One seemingly insignificant occurrence—missing a train—not only altered the course of her day, but of her life in the bigger picture as well.

Timing really is everything.

Well, this is what got me thinking…How would my life be if certain things had happened differently? Or had not ever happened? What would my life look like right now? What would I be doing? Who would I be doing it with? …or on the flip side, Would I still even be alive at all!?

Those questions, their answers and the emotions that come along with them are overwhelming and paralyzing. The possible scenarios are endless.

Does my life resemble in any way, shape or form what I would have imagined it to or would have wanted it to, at 23 years old? Umm... No. Not even in the slightest bit.

I am learning that entertaining these thoughts really does nothing except to invite feelings of insecurity, doubt and fear… and this is exactly where my mind was going with all of this.

I needed a distraction, now, fast.

So I decided to turn on my computer...only to see in the time I was spending sitting here thinking these overwhelming “what if” thoughts about my life, this blog had just reached over 90,000 views! On YouTube, the “Counting on a Coma” report that FOX news did about my story has had nearly 50,000 views! I have several emails of encouragement in my inbox, many from others who are suffering in a similar way, some without a diagnosis, who after hearing my story are now getting the help that they need, or feeling hopeful about their situations again… This all completely blows my mind. How God would choose to use my story and pain to help others is beyond my comprehension. My strength is instantly renewed, I am so incredibly humbled.

Sure, my life may not look the way I envisioned. But God has made such incredible provision for me along the way! This is what I need to focus on and be constantly aware of. Not the doubts. Not the “what if’s”.

Interestingly, in end of Sliding Doors, Helen’s life in both scenarios has the same end result... she is in an accident. However, every detail leading up to how she arrives there—to the type of accident, the circumstances, the opportunities and challenges, the hospital she is in, the doctors who attempt to save her life, the people who are sitting at her bedside--- are all completely different.

Wow. We don’t know why some things happen. We may never know. Even though we may not always ‘see’ it or ‘feel’ it, God is always at work orchestrating our lives—every little, seemingly insignificant detail! My job, our job, is just to trust Him in whatever circumstances we find ourselves in.

That sounds simple enough. But it’s a hard lesson, one I am sure I will spend the rest of my life learning over and over, and over, again. Just like I did tonight.

I do know that He wants us to live way beyond the shadows of our doubts! And that is a promise I can most definitely trust in, always.

I just wanted to say thank you to everyone who has followed my story this far. 90,000 hits to this blog… just awesome! Thank you for all of your love, encouragement, support and prayers. I know there is no way I will ever be able to thank each person individually, but I just want to you to know that I am doing incredibly well and you have made a difference in my life, more than you will ever know and more than I will ever be able to say.

I thank God for you all!!

In God's incredible love,

John 11:14

When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.”

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Sunday, July 3, 2011

Blessings through raindrops

It has been raining a lot this past week here, thanks to tropical storm Arlene.

Finally, yesterday afternoon the rain cleared up and the sun came out. Mom and I jumped at the chance to go out and get some fresh air. There’s a little area on the first floor of our building that overlooks the mountain. I love to sit down there. Seeing the sky, listening to the birds and feeling the breeze, to me, is as amazing as it gets.

So mom helped me wheel down and she went back upstairs to make us lunch.

As soon as she left me the sky started to get really dark. Clouds started rolling in and within minutes I couldn’t even see the mountain anymore! I knew it was going to rain, hard, any second.

And it did. As I sat there getting completely soaked I found myself trying to remember when the last time I had actually felt rain on my skin was!

It didn’t take me long to remember.

It was when I was in Tampa Florida to be evaluated by Dr. Kirkpatrick to see if I was a candidate to come to Monterrey for the Ketamine Coma study with Dr. Cantu.

As we got ready to leave his office it began pouring rain. In Florida these rain storms usually only last 10-15 minutes, so we waited…and waited. But it didn’t stop.

We finally had to just go for it.The EMT’s pulled the ambulance up as close as they could to the door and worked as quickly as possible to get me in.

Unfortunately, not quick enough.

The pain of the rain hitting my skin was so intense… like both hot drops of lava and cold sharp ice picks hitting me all at once. I can’t even describe it. I decided to try and just hold my breath and stay calm so everyone could do their jobs more quickly and effectively.

Well, that plan went out the window the second a few raindrops landed on my right arm, which at that time was covered with about 50 open, bleeding skin lesions.

That did it. I completely lost it. I shrieked in pain.

By the time we were in the ambulance I was in crisis mode. The EMT’s looked on in horror as my arm changed colors, bled, contorted into weird positions and my entire body shook uncontrollably. They tried to help, but there was nothing they could do.

I remember the EMT who was riding in back with me, commenting that every hair on my body was standing straight up, like I had been electrocuted. If only he knew, that is exactly what RSD pain feels like... all of the time.

He turned to my mom, “Is it always this bad? I have never seen anything like this before.”

Yeah, that pretty much sums up RSD pain too… not like anything you’ve seen or felt before, ever.

It was only a 5 minute ride, but it seemed so much longer.

As I thought back to that last time I felt the rain, I was overwhelmed with how different it felt to me now.

Here I was, getting drenched… and I felt… wet. No boiling lava or stabbing icicles. Just happily wet!

When my mom realized it was raining, she rushed downstairs expecting to rescue me… but instead, she found me sitting there, taking pictures of the (now invisible) mountain, loving the feeling of the rain! We both sat in the rain together for a few minutes literally soaking it all in, thanking God for bringing us to this point.

I had heard a song earlier this month that I really liked. It is called “Blessings” by Laura Story. The chorus of the song goes, “What if your blessings come through raindrops/ What if your healing comes through tears/ What if a thousand sleepless nights are what it takes to know You’re near/ What if trials of this life are Your mercies in disguise."

I liked the song originally because of its message of how even in the hardest, most painful things we will ever go through, God is always there to love us, guide us and help us through.

But now, this song has a dual meaning to me... Yesterday, my blessing literally came through being able to feel raindrops!

These are the pictures I took as the storm approached:

This is what it looked like when mom brought me outside

This is about 3 minutes later!!!

Thank you Jesus for the rain and for bringing us through it! Amen!

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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!