Like new!

Yesterday we removed the final bandages from my incision, at first I was scared to even look... but I have to say that I am pleasantly surprised.

The first thing that I noticed right away was that the hole where my feeding tube used to be is gone! That was a surprise!

Even though the tube itself had been removed almost a year ago, in its place I had been left with an oddly-shaped hole that looked like a very misplaced belly button. (Attractive, I know…)

It turned out during this surgery that entire area had to be cut out and removed because it was directly attached to the mass underneath.

A blessing in disguise! Now you would never even be able to tell that a 2 foot long feeding tube once resided there!

It's like new!

The second thing that I noticed was how great the incision itself looked and how quickly it has healed. It is perfectly straight and the scar is barely noticeable.

I have two other large scars on my abdomen from previous surgeries in 2007 & 2008. When the bandages came off of those, I looked, and felt, like Frankenstein!

But not this time.

Dr. Balli decided that for this surgery it would be best if he didn’t use any large sutures or staples at all—he didn’t want to introduce anything into that area that my body might decide to “attack”.

Instead, he stitched each layer of skin and muscle back together, individually, with the smallest sutures possible, from the inside out. It looks fantastic.

Again, like new!

The next thing, was not something that could be ‘noticed’, but had to be felt...

Before the surgery I had been having a very specific area of sharp pain in the lower left part of my stomach. Whenever I touched there I would get a pain that felt similar to when a dentist probes a bad cavity in your mouth with his little metal tool—a very quick, unpleasant, electrical shock type of pain.

Yesterday, as I cautiously touched that area, part of me was waiting to feel the same shocking sensation...

But it was gone!! Completely gone.

No more hole from the feeding tube, no more granuloma and no more pain.

Seriously, like new!

I know to say I am pleasantly ‘surprised’ about these things is probably not the best word choice, but I am just really happy and really thankful.

Thankful for Dr. Cantu's wisdom and insight, thankful for Dr. Balli's surgical skill and technique most of all, thankful to Jesus, who makes all things new!

Thankful to everyone for the continued prayers,,,Just thankful for everything!

Please keep the prayers coming, not only for me, but for all of my friends who are in need.

In God's love, Jessica

Revelation 21:5 “See, I am making all things new.”

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Happy Father's Day!

Dad and me

I know I always write about my mom, since she is here with me physically as my advocate and source of strength all of the time, however, my Dad has been a very important part of my journey here as well, as a source of strength both emotionally and spiritually.

So, today, Father’s Day, I thought I’d share a little bit about him.

To start with the basics…My Dad’s name is David. He is 57. He loves the beatles and he loves to read. He is a huge American history ‘buff’ and He is a computer genius. He enjoys collecting things (too numerous to mention!) and he loves doing puzzles.

He can answer any trivia question on any of these topics and he can hold a conversation with anyone, at any time.

He is hilarious and he is always quick to have something witty to respond back with to any comment.

His greatest passions in life are Jesus and his family.

He loves being a volunteer fireman.

After my sister was born, my Dad was feeling very outnumbered in our home. He decided that he needed a place to go where he could just be a ‘guy’ and do ‘guy’ things. And he found that place at the local fire department.

Yes, I guess you know you have had too many daughters when you are willing to go and throw yourself into a burning building just to have some male bonding!

But while everyone else saw him as a strong fireman and leader at work---by day---by night, he was back to playing the part he was born for- the role of Dad.

He has always been the type of dad who has found joy in doing whatever brought joy to his daughters.

He will probably kill me for sharing this, but my Dad is one of probably only a few fathers out there that I know of did this for his daughters… he played dolls with us.

But oh, he did not just play. He brought them to life! He would give them unique names, make up funny voices for them and hilarious stories about them.

We had years of endless fun doing this. I honestly don’t know who enjoyed these games more… us or him! (Actually, I think Mom did, because as long as daddy was playing with us- we were entertained and not bothering her!)

My Dad loves Jesus and his faith defines who he is more than anything else.

This was most evident when after going through the coma and having memory loss, the first thing that I recalled about my Dad was that he loved the bible!

It wasn’t his name, his age, his profession, his hobbies, or anything else that came to my mind first, it was his love for Christ.

I think that is pretty meaningful and speaks volumes to the type of man my Dad is.

For as long as I can remember, every night before bed my Dad would tell me bible stories. He would not just simply read them though…just like he did with the dolls, he knew how to make these stories come alive, too!

Yes, David, Goliath, Moses and even Jesus each had their own special ‘voices’ and ‘personalities’ that Dad would put on to go along with each story!

I am so thankful my Dad instilled the truths in those stories into my heart and mind at such a young age. I never could have known just how much I would depend on those messages of God’s love to get me through my illness.

I’m so thankful that God has given my dad to me as my earthly father and I am so thankful to my Dad for teaching me about Him, my heavenly father.

It has been the greatest, most valuable gift he could have ever given me.

“Fathers, do not exasperate your children; instead, bring them up in the training and instruction of the Lord.” (Ephesians 6:4)

Dad, You are a great living example of this verse!

Thank you for teaching me, loving me, correcting me and guiding me. Thanks for being a wonderful father, one who loves unconditionally and who would sacrifice everything he has in his possession for his childs health and happiness.

I love you!

Happy Father’s Day!

Jessica xo

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We don't have to plan...

Since my Mom first began this blog the header at the top has always read “Jessica’s Journey” with Jeremiah 29:11 underneath it. “For I know the plans I have for you, declares the Lord….”

Whose plans? Oh right, His. Not ours.

How easy it is to sometimes lose track of that.

You’re going down this road, thinking you have it all figured out, and sometimes you miss the red lights, speed bumps and nails in the road that are being thrown in your path to slow you down or turn you in another direction entirely.

Ignore these things long enough and pretty soon what you are left with is a flat tire.

That is what this past month has felt like for my family and me, only we had two flat tires—both my Dad and I found out that we needed surgery. Both of us were admitted to the hospital and ended up having our surgeries done on the same day.

In a matter of a few weeks we went from my Dad packing up our house in New York in preparation for his move back down to Florida with my sister Michelle. My sister Katherine packing up her dorm and preparing to move in with a friend and Mom and me beginning to plan for the next step to take in my health journey as well…. These plans all came to a halt.

“I”….”My”….”We”…Our”…

Yikes.

Those words of self-reliance.

We were certainly making a lot of our own plans.

What is still amazing to me is how God will make himself more known to you than before during that time while you are sitting there, on the side of the road, feeling totally confused and wondering how you were going to even begin to change this tire.

He will send in special people to wait with you, help you remove the nails, to lend you their spare and ultimately get you back on the road.

So many of you have done that for my family and I and we are so thankful for everyone of you.

So… How do you not plan for the future? Well, I still don’t know the answer to that and I am sure that I never will. Actually, I hope I never do.

What I do know though, is that as soon as “I” begin to feel like “I” know the path “I” should take… it means that “I” am the one making the decisions.

For now, we will be content to continue to take it one day at a time, just as we have done this entire time.

For today we are rejoicing in the fact that my Dad and I are both out of our respective hospitals. We are praising God that I am having minimal post operative pain and no flare up of RSD pain. We are trusting that even though we do not understand why these flat tires were placed in our path, God has the entire road map layed out before him. We only see what is in front of us right now, but He sees the entire journey- beginning, middle and end.

We don’t have to plan.

I ask for prayers for my family that we are better able to discern and pay attention to the traffic stops and speed bumps along the way as we recover from these flat tires and move on to the next step of our journey.

We are still awaiting my biopsy results and I ask for prayers that they are favorable and do not show any surprises. I am running a low-grade fever, so we are going to run more blood cultures today to make sure I do not have some type of infection. Please pray that I do not, as infections for my body are never a good thing. Hopefully the fever is just due to some inflammation I am having post-surgery.

I especially ask for prayer today for my friend Blair, another Ketamine coma patient from Canada, who is in the hospital and very sick. I know that I have some amazing prayer warriors who read this blog- God hears and I know He answers. Pray for wisdom and compassion for his doctors and peace and healing for him.

Thank you everyone for your continued support. I am feeling shockingly well. My outcome from this surgery is much better than any of my doctors (and even I) expected. Dr. Cantu expected me to need to stay in the hospital at least 2 months, we were prepared to need to rehabilitate my GI system and go back on TPN (IV nutrition), the nurses were all taking bets on how long I would need to be admitted to the ICU post surgery for pain control. None of this happened.

Thank you for praying, believing.

In God’s Love,

Jessica

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Happy Birthday John!

I wanted to write this in honor of my friend John Roach’s birthday. He is 52 years young today!

John is a fellow RSD patient who also had the Ketamine Coma here in Monterrey.

Up until 9 years ago, John was a very active man. He volunteered as a fireman and worked at a very physically demanding job at a utility company. That is, he had an injury that changed everything and he developed RSD.

Before RSD John also loved singing. He persued his wife, Rosemary, by singing outside her bedroom window until she agreed to go out with him. He promised her that if she would marry him, he would sing to her everyday for the rest of their lives.

When I met John at the hospital here last April, even laughing was not possible for him. Any type of activity at all that required the use of the muscles in his neck caused him severe pain flare ups in his neck, shoulder, arm and hand.

Needless to say, singing was out of the question...

Rosemary has referred to the day of John’s injury as “The day the music died” in their household.

The suffering that this disease causes, and the things that you lose because of it, never cease to amaze me. But how special people can come into your life through this pain, continually amazes me as well. John and Rosemary have become part of our extensive extended family we have accumulated here in Mexico and we’re blessed to know them.

On Wednesday morning before my surgery, I got a special call via skype. It was John. He said that he had a surprise for me—he was going to sing to me!

I had the honor of being the first ‘concert’ that he has performed in years!

He sang “You’ve Got A Friend”by Carole King.

.”…You just call out my name

And you know wherever I am

I'll come running to see you again
Winter, spring, summer or fall
All you have to do is call
And I'll be there
You've got a friend…”

John serenading me via skype

Wow. I am not a very emotional person. However, I was crying. He has a beautiful voice. But I think I was crying even more over the fact that this gift, which is definitely a God-given talent, has been restored to him once again.

Singing is filling John and Rosemary’s home again. I am so thankful to see how far he too has come in his recovery after his treatment here.

John, if I had ANY singing talent whatsoever, you know I would be calling you this morning to sing to you, but, I think it is safer for both of us that I do this with words instead. :)

Happy Birthday!

Thank you for being my friend.

Love. Jessica

Out of the hospital!!

Hi!

I am writing this update from my bedroom back in the apartment here at my Mexico home away from home!

I know. I still can’t believe it either…After only spending 8 days in the hospital! With my first stay at Hospital San Jose being 10 months and my second stay lasting nearly 3… this is definitely a personal best! The past few days seem like a big blur to me. I am physically and emotionally exhausted but I am so happy to once again be out of the hospital!

I had my surgery Wednesday evening. I was wheeled downstairs to the operating room at 4:30 pm and got to see the doctors, residents, nurses and technicians before going into the OR. Everything with my surgery went very well.

Thursday morning Dr. Balli came up to my room and entertained me with the ‘story’ of my surgery in colorful, vivid and lively description—as only he can.

I got to hear every detail of how he cut through the layers of my skin, muscles and nerves, carefully moving each out of the way as he went down deeper, following the ‘tract’ that this granuloma had formed, while trying to both find and remove the source of it as well. He ended up having to go deeper than he had wanted or anticipated, down to my small intestine, but we are very thankful that he did not have to actually cut out any of my intestine to fully remove this thing- which would have turned this into a completely different surgery and recovery altogether.

What is even cooler is that none of these ‘images’ were left for me to picture with my own imagination because Dr. Cantu took several pictures during the surgery with his Iphone! I wish I could post them on here for everyone to see, but however cool these photos are to me, I’m not so sure everyone else would think so. I have never had pictures of any of my procedures before and I’m really thankful that Dr. Cantu did this for me. Well, actually, I’m really thankful for everything that he has done, continues to do and will do for me. But I could write a novel about all of that and this is already getting long… so anway…

Thursday afternoon I had another Ketamine booster to help control my pain. I than started running a low grade fever. We believe it was either due to the iron infusion I had earlier in the day, or from the blood and plasma transfusion I had before surgery (yes… I am now even more Mexican!).

Yesterday morning the fever was gone and I was feeling better, so It was decided at that point that I needed to get out of the hospital before any infections could develop. I will continue on IV antibiotics and medications here at home as I rest and recuperate.

It’s still unbelievable that all of this happened only 3 days ago. More unbelievable still is how well I am doing post this surgery. In the past, after any type of procedure, I have woken up down in the recovery room screaming and in explosive RSD pain burning through my entire body... the type of pain that is un-extinguishable even with the strongest medications.

This time was different. Yes, obviously, I am in pain, as I was cut open. But the difference is that this pain is is localized in the general area of my surgery and not igniting a lightening storm of RSD pain in the rest of my body. A ‘normal’ person would probably consider the pain I am feeling post surgery to be a high level, but when you have been through the horrible pain of RSD, this pain seems minimal and manageable.

Having an RSD flare up was my biggest fear about the surgery and this is huge relief and answer to prayer! It is proof to me of just how much healing has taken place in my nervous system and body as a whole because of the treatment that I have had here.

I definitely think that the five days of Ketamine infusion I received prior to surgery, along with using it during the surgery, along with the heavy amount of local and general anesthetics and surgical technique that were used… all played an important role in the outcome. Dr. Cantu and his team are learning more and more about how to handle an RSD surgery case and I am grateful for the doctors here who are willing to listen and to learn from their patients.

I know that God placed me in the best hands possible having this done here. We praise God for the healing that has taken place in my body. For the skill and wisdom of my doctors. For the amazing people he has placed into our lives to cater to our needs and help us through this. For being who He is—a God who continually does more than we can ever ask or even imagine.

I ask for continued prayers for my Dad, who will hopefully be leaving his hospital in NY sometime today. For continued healing in my GI system, that the removal of this granuloma will now allow my system to heal and work normally again. For strength and patience as I recuperate from my hospital stay.

Please also continue to keep all who are suffering with illness and pain in your thoughts and prayers too.

I will update again in a few days. Thank you all for the continued support and prayers.

Love, Jessica

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Thanks For All Your Prayers

Just wanted to quickly update and let everyone know that Jessica had her surgery last night.

She was given a blood transfusion in the morning to correct her low blood counts and just prior to surgery was given 3 units of plasma so that she would not lose a lot of blood.

Before going down to the operating room we had a special visit from Pastor Long who prayed over Jessica. Dr. Balli happened to be in the room talking to Jess pre-surgery when Pastor Long arrived, so she asked him to pray over his hands- that God would guide and direct them during the surgery. This was very special to her, and Pastor Long told us that it is rare to have this opportunity to pray over a surgeon's hands. And later that afternoon, Jessica asked to see Dr. Cantu before her surgery - so that she could pray over his hands too!!! We know that God has been with Jessica every step of this journey and that he was with her and the doctors in the OR tonight..

Dr. Balli, says from a surgical standpoint, the surgery went well and the granuloma in her stomach was successfully removed. Dr. Cantu administered massive amounts of both general and local anesthesia to sedate her and numb the area to block and control the surgical pain.

She is back up in room 845 and is resting. She will continue to be on a Ketamine drip and will be receiving boosters for the next few days.

I will update again soon on Jessica and her RSD- status post surgery. Please continue to pray that she does not have flare up from this and that she does not develop any infections while in the hospital.

My husband, David, also had his hernia surgery yesterday afternoon. My daughters Katherine and Michelle and Katherine's boyfriend, Paul, are with him and he will hopefully be discharged sometime tomorrow.

Thank you all for your support, love and continued prayers. They are heard, felt and answered in ways we never could have imagined. I would like to thank my "Mexican Family" who came to sit with me in the waiting room during Jess's surgery. Dr. Rainbow-Jessica's Mexican "Abuelita", Barbara, Cindel, Lalio, Marus and Paulina... God has truly blessed us with so many wonderful people in our lives, we are forever grateful.

In God's Love,
Sarah Gina


"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe."- Psalm 61 1-3

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Surgery Is Today!

Dear Family & Friends,

Jessica will be having her surgery today for removal of a granuloma at 4 pm. It will also be necessary for her to receive a blood transfusion before surgery due to low red blood counts, as well as plasma.

We ask for special prayers for her today. It is anticipated that the surgery will take at least 2 hours or maybe more depending on what they find and how deep they have to go.

Please pray also for Dr. Cantu, Dr. Balli, and Dr. Luigi and all that will be present in the operating room.

I will let everyone know how things go as soon as I can!

In God's love & trust,
Sarah Gina

P.S. Please pray also for Jessica's Dad who will be having his hernia surgery today as well at 1PM in N.Y.!

"God is our refuge and strength; an ever present help in trouble. Therefore we will not fear." Psalm 46:1
"But I will restore you to health and heal your wounds", declares the Lord." Jeremiah 30:17

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Where Everybody Knows Your Name...

Hello everyone. I am now on day 5 of this hospital stay and the fact that I am back here in Hospital San Jose is finally starting to really sink in now. As you can imagine, it is no fun at all to be back here. I keep saying it is like sending a Vietnam war veteran that back to Vietnam—its not somewhere you would ever want to go back to! But I guess in life, we just don’t know the plans that God has for us and why things happen the way that they do.

I do have to say that coming into the hospital this time has been a very different experience for me.

This time, rather than being rushed in by ambulance through the emergency room, on a stretcher and severely ill, I rode to the hospital in a wheelchair-accessible van and was admitted under the usual process via the international patient coordinators office. From there we passed through security and the waiting area. I was given a hospital bracelet. “Jessica Stevens. Room 845” it read. Same name. Same room.

I saw the gift shop where so many brought balloons and things for me, the chapel where I know so many prayers were lifted up for me, the coffee shop where my Mom got her daily supply of energy to take care of me.

As weird as it this sounds, this was the first time I actually got to see any of the first floor of Hospital San Jose. Before this I had only seen the ER, the ICU, the operating room, the hallway on the 8^th floor and the inside of my room.

Let’s just say that a sure way of knowing that you have spent too much time in a hospital is when, upon arriving and giving your name, the security guard- who you have never met before—recognizes not only the name, but recalls what room number you were in!

The only thing that would have enhanced this experience would have been if the Cheers theme song, “Where Everybody Knows Your Name”, somehow, had begun playing in the background as I was wheeled upstairs.

I thought that coming back here, into this room, would give me major deja-vu and flashbacks to the year that I spent in here fighting for my life, but oddly, that has not happened.

It is so different..

The room is no longer filled with all of the signs and “get well” cards, pictures and bible verses on the walls. It feels empty. The ceiling tile directly above my bed has been changed and no longer has the same little crack in it that I spent so many nights staring up at, the couch that my mom spent each night asleep on has been changed from a green one to a new blue one.

Some things have not changed.

The smells and sounds are the same. The toxic aroma of the big bottle of “Ex-germ” hand sanitizer that burns your eyes and nose, the sickly sweet lemon scent of a freshly cleaned hospital floor. The infusion pumps whirring and beeping, nurses speaking in spanish over the noisy intercoms and the squeaking sounds their shoes make as they walk up and down the halls, clicking doors open and shut as they check on their patients, the sound of others suffering as they call for assistance…These things all remain eerily the same.

I have changed though. Every nurse and doctor who has come in to see me has told me that I look “super bien”- which here in Mexico means “very, very good!” They can’t believe the improvement I have made and how much better I am doing! The chief nurse told my mom and I that I was one of the most ill patients and one of only two that have stayed in this hospital for over a year. Most patients who come in here are treated and than ‘lost to follow up’- the nurses do not see them again and do not get to see their progress. They keep saying how my recovery is a miracle. Everyone can see how this treatment truly works and for me, has been life-saving. It is rewarding for them, and I definitely never get tired of hearing it!

However, even though this time I am not acutely ill, I am still acutely aware of all that can and has gone wrong with me while being in a hospital.

Mom and I are being extremely cautious- making sure that the nurses are washing their hands, wearing masks and using alcohol swabs each time before connecting a medication to my medi-port. I am having some pain in my stomach, but I am grateful to be here in the capable and caring hands of the amazing Dr. Cantu (who wore a Green Shirt yesterday…) whose knowledge of this illness is surpassed by none, who knows my body and knows how to manage this pain so that it does not explode into a full blown RSD flare up.

My surgery will hopefully be sometme later this week. I have been switched from my regular blood-thinner that I have been on for the large blood clot in my arm, Coumadin, onto IV Heparin. I am being given Vitamin K to try and get my blood-clotting factors into a safe range for surgery. A “safe” INR level to have surgery is between a 1.0-1.5. Mine is still higher than that. Please pray that this level regulates soon so that we can proceed with the surgery and I can get out of here.

Even though a lot of things about this hospital experience may be different this time, the people who are here-- both with me physically and for me emotionally-- have not changed. Room 845 is a healing room and this is a healing place. God is still in this room with me. He never left. He is here and is still in control.

Please pray for strength for my Mom. Her love for me is unbelievable. Her happiness depends on my health and my being back in the hospital is harder on her in some ways than it is for me.Please also keep my Dad in your prayers, as he is going back into the hospital for hernia surgery again tomorrow.

Please pray for Dr. Cantu and all of the doctors and nurses here, that they have the wisdom to do what needs to be done to get me well.

I especially ask for prayers that I have no infections to prolong my hospital stay. Any type of infection is devastating for my body and seems to re-trigger a lot of my symptoms. We cannot afford to have any of those problems again… We have come way too far. .Bring on the Ex-germ!

Thanks again for the love and prayers.

In God’s love, Jessica

“The Lord thy God in the midst of thee is mighty; he will save, he will rejoice over thee with joy; he will rest in his love, he will joy over thee with singing” (Zephaniah 3:17).

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Update on Jessica

Hello to All,

Just wanted to give everyone a quick update on Jessica.

We arrived back to Hospital San Jose this past Friday-June 3rd.

After going thru admittance, she was brought up to the 8th floor and back in room 845 - the same room she was in the last time. I must admit that it was a little surreal to be back here once again and in the same room.

She was taken off of coumadin and put on IV heparin. We will wait until her blood levels are at the correct number in order for her to have the surgery for removal of the granuloma. She is also on IV antibiotics and IV ketamine.

For now we are in a holding pattern until the proper time for surgery.

We place all our trust first in God, then Dr. Cantu, and all the doctors and nurses here at Hospital San Jose.

Please keep Jessica in your prayers. I will keep everyone updated as to when the surgery will be.

In God's love, always,
Sarah Gina

P>S>
Paulina, the 12 year old daughter of a dear family we have met while here in Monterrey visited us last night. As she was leaving she said to Jessica:
"DO YOUR BEST AND GIVE GOD THE REST!!!".
What wonderful words from such a young girl!

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Special Prayers Needed....

Hello family and friends,

I feel guilty for not frequently updating this blog over these past few months. Jessica has been doing so well. Her healing is truly a miracle and I thank God everyday that I have my daughter back.

She has been having GI problems and pain in her abdomen, underneath where her feeding tube that was in for 3 years had been. This past week the pain escalated and there was something protruding out from where the tube had been.

Dr. Cantu brought her in for testing yesterday and it was determined that a granuloma has formed in that area. It has infiltrated the surrounding tissue and muscle and needs to be removed. Jessica’s surgeon, Dr. Balli, has told us that it is very rare for this to occur many months after the tube was removed, however, we all know that with Jessica- things never go ‘normally’ or as the medical textbooks say that they should.

Any type of surgery is very risky for an RSD patient and it is really not something you ever want to do on an area that has been affected by the disease, as this can cause a re-triggering of pain and cascade of other symptoms. We know this fact. However, we also know that our God is greater than any ‘fact’ or medical statistic.

Jessica has been feeling and doing the best she has these past few months and we will continue to claim her healing and victory over this illness!! The huge blessing in all of this is that it happened while we are still here in Mexico, where we have Dr. Cantu who can use Ketamine during and after the surgery to treat the RSD.

Please pray for wisdom for Dr. Cantu, Dr. Balli, Dr. Luigi and all who will be involved with Jessica’s care during this surgery, for peace and strength for Jessica and I as we prepare to go back to Hospital San Jose tomorrow, and for no complications or infections to prolong our time spent in the hospital—which will hopefully only be 1 week.

Jessica is going into this with the most positive attitude. She says that as long as she has her “dream team”—God, Me and Dr. Cantu—along with ALL of your prayers—she can overcome anything.

We hope that all of you are well.

In God's Love,

Sarah Gina

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