Overwhelmed

IMG_20160212_085918So, Rebecca is back in the hospital. Actually, she has been ‘back’ in the hospital since last Saturday, I was too busy to update.

Just in case you were ever in doubt:

Hospitals = NO EXTRA TIME.

The iron infusion Rebecca was hospitalized for almost two weeks ago triggered an autoimmune relapse. Rebecca’s autoimmune disease has inflamed her brain-stem which regulates her heart and oxygen rate. Her vitals result in bottomed-out oxygen saturation levels and extreme heart rates. This makes it difficult, if not impossible, for Rebecca to walk and even sit up at times.

In short, this is the same issue Rebecca dealt with last February that hospitalized her for 16 days and the same issue she was placed on a BiPAP machine in 2014.

Our goal this round is to quiet Rebecca’s immune system by loading her with large doses of steroids while giving her supplemental IV bolus support and oxygen. Now that we (think we) know what we are dealing with, we pray to reverse Rebecca’s symptoms in a timely fashion without incurring more damage.

Wow. I just crammed an incredible amount of medical information in a few sentences. I might be a word genius…

Sometimes, not all of the time, but sometimes I get overwhelmed.

Shocking, I know. Especially considering my life is so calm and uneventful.

When I feel pressure mounting from the barrage of confusing specialists’ opinions, to the barrage of confusing lab results, to the barrage of confusing procedure reports; while looking at my child in a hospital bed for the 1,100th plus day in her life, still in pain and still struggling to comprehend her endless ailments, I indeed, feel overwhelmed.

Again, shocking. I know.

At times like this, it was as if Paul read my mind while writing 2 Corinthians 1:8-9, “we were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death.”

  • Under great pressure – CHECK.
  • Far beyond my ability to endure – CHECK.
  • Despair of life – CHECK.
  • Felt the sentence of death – CHECK. CHECK.

There will be times in our lives when we are overwhelmed. Overwhelmed to the point of despair. Overwhelmed to the point of death:

A broken marriage…

Severe loss of income…

The death of a child…

A terminal illness…

But verse 9 ends with, “this happened that we might not rely on ourselves but on God…” Because, in our desperation, we were never meant to carry the burden of our crises.

We were meant to rely on God.

Years into my hospital existence, I noticed something about myself in moments of complete and utter ‘whelm’. Without consciously thinking, I place my hands against my chest and fly them, ever so slightly, toward the sky. Not to the point where anyone would think I was crazy (although that statement is debatable), but just enough to give merit to my action.

A humble attempt at relieving pressure by casting my cares upon the Lord.

The greater the burden I feel, the more my hands repeatedly reach for the sky. Today is one of those days where my hands are weary…

This unremarkable gesture became profoundly remarkable to my soul. A simple reminder to rely on a God who knows far more about my child’s condition than the entire said barrage of specialists, lab interpreters, and procedure reports combined.  My unexpected miracle.

Thank you Lord.

“Cast your anxiety on Him because He cares for you,” 1 Peter 5:7.

Thanksgiving Thoughts From a Teenager

Happy happy Thanksgiving from our family to yours. Rebecca wrote these words I wanted to share on the day of all days to be grateful.

We love each and every one of you,
Christyn:

My first Thanksgiving in a hospital happened when I was nine-years old.

The longed-for holiday arrived after a complicated procedure, and my body refused to heal. My day was spent resting while watching the Macy’s Day Parade, and then a visit to all of the nurses on staff, where I handed out a few tediously detailed, handmade cards coated in piles of glitter. Cards I spent hours making while propped up on a pillow and covered in heat packs to ease the pain.

My mom worked tirelessly to help me with the cards and miraculously managed to convince the doctors to check me out of the hospital very late at night.

After packing up our home-away-from-home, complete with multicolored pillows, wall stickers, and welcome signs, we drove home where I was able to spend the night laying on the couch and watching movies with family.

That year, on that Thanksgiving, I realized I had so much more to be thankful for than things on the surface. Sure, I have spent most of my life sick and hospitalized. I miss school, and I am often too weak to hang out with friends. But because of my life, I am able to appreciate the out-of-the-ordinary.

I have two families.  Not only do I have my brothers, parents, grandparents, aunts, and uncles to love, but I also have another family with my fantastic teams of nurses, technicians, and doctors. They treat me like a daughter, something that meant so much more to me than they could have possibly realized. And so, first off, on this Thanksgiving, I am thankful for all the medical providers out there who have helped to keep me alive all these years.

Secondly, I am thankful for my disease. Without it, I would not be who I am today.

I would not be able to stand up for other children who have pediatric pancreatitis or any other form of disability.

I would not have the platform that I have today, where I  am working to change the world one  life at a time.

I would not trade places with anyone else in the world.

Because of my pediatric pancreatitis, I can hold a hurting child in my arms and tell them I understand, while they know someone loves them and wants to take care of them.

So this Thanksgiving, when giving thanks for the good, remember the bad, because the storms in life make us who we are and teach us to truly appreciate everything around us.

Written by Rebecca Taylor

The Great Political Divide

In light of the upcoming election, I feel this post is necessary:

My ever-talented husband won an award recently. He was named a ‘Top Performer’ out of 206,000 employees at his workplace. As a thank you, the powers-that-be flew Brian and I to Georgia to stay in a fabulous Ritz Carlton to ‘live large’ for two and a half days. Those almost 3 days were my husband’s incentive to go back and work at ‘Top Performer’ level for the next year.

Work hard for 362 and a half days, play hard for 2 and a half.

We live in a strangely accepted upside-down society.

You never heard a complaint from me though, as I lived the life of luxury and pretended I was a Very Important Person for a full 60 hours. I enjoyed every moment of this wine-and-dine experience and failed to mention to the event coordinators that even a Motel 6 would seem like a dream vacation compared to the hospital room I spend a good portion of my time residing in.

We will keep that our little secret.

On the second morning of the trip, we were called into a meeting where they presented a surprise guest speaker. The man’s name was Theo Epstein and he was the General Manager of the Red Sox when they won the World Series for the first time in 86 years. He then became the General Manager of the Chicago Cubs when they won the World Series for the first time in 108 years. Apparently, this man is Baseball Royalty. I say apparently because, much to the chagrin of my husband, I did not know the Red Sox nor the Cubs even won the World Series.

And if I am brutally honest, I did not know which city the Red Sox team comes from… still don’t.  Thought about looking it up on google to sound like I did not live under a rock but decided one of you would tell me anyway. I did discover the Cubs location VERY quickly when they said the word ‘Chicago’ before it. I am smart like that. But despite my profound lack of knowledge in the sports arena, I thoroughly enjoyed Mr. Theo’s humor and quick-witted stories about his players.

As soon as the talk was over, when I was more than sure the financial spreadsheets were about to pop up on screen giving a play-by-play of quarterly metrics, I attempted to stealthily bow out and visit the pool. I had no intention of burdening my resort-mode brain. In my astute stealthiness, I ran smack dab into an elderly woman impeccably dressed in a bright blue suit. Starting to apologize, I looked at this woman’s face and exclaimed, “Oh! I know you!!” to Former United States Secretary of State, Dr. Madeleine Albright.

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Yes, you read that correctly, I ran smack dab into the first woman Secretary of State in the history of our nation.

And for those of you wondering, I do not officially ‘know’ this pillar in politics named Madeleine Albright. Nor did I ‘know’ the other titanic Former United States Secretary of State towering over me and Dr. Albright, now chuckling at me, named General Colin Powell.

Of all the gracious and eloquent statements I should have, and could have, said in that moment, I just sat there staring, dumbstruck and tongue-tied.

Epic fail.

I snuck back to my seat and told Brian of my gaffe while he shook his head and said, “You told her you knew her??”. Yep. Sure did. He then looked at the name-tag on my chest to verify everyone in the room would know he was officially linked to me. (Full disclosure: Before going into a spouse meeting earlier that morning, my husband hinted it might be best for me to remove my name-tag before asking the CEO questions. I am still not sure why??).

I sat back down in my seat mesmerized, forgetting all about the pool, and listened intently to our now triple surprise guest speakers. They did not disappoint. Albright and Powell’s perfected balance of banter and humor while discussing serious topics about our country was brilliant. And educational. And insightful. And thought-provoking. All at the same time.

These two rivals in politics with vastly different opinions, openly discussed their famously close friendship. Dr. Albright, with General Powell’s vigorous approval, advised everyone in the room to set judgement aside and listen openly to another’s point of view. Even if you do not agree. A shocking concept.

The highlight of their talk…actually, the highlight of the entire trip… was watching this tall, black, Republican, Christian-born, Jamaican immigrant man hold the hand of a short, white, Democrat, Jewish-born, Czechoslovakian immigrant woman as they walked off the stage.

It brought tears to my eyes.

Regardless of my opinion on the two Former Secretaries of State’s political points of view – my opinion on their ability to show love was flawless.

What would happen if we all embraced the opposite? The opposite of our background, our culture, our religion, our skin color, our sex, our politics, our fill-in-the-blank…. What if we made a choice to love not despite but because of our differences?

The rigidly conservative, legalistic elderly man embraced by a militant, bra-burning feminist.

The anti-gun activist embraced by an NRA, gun-toting lover.

The desperate illegal immigrant embraced by the rule-following border patrol agent.

The devout Muslim embraced by the devout Christian.

The capitalist embraced by the socialist.

The list of ‘opposites’ to love in our lives are endless. And what an opposite world we would live in today if we embraced this point of view….

Our minds would open, our perspectives broaden, our circle of friends widen, and our hearts enlarge.

An unexpected miracle.

Thank you, Lord.

Building Boys

In the midst of our mayhem my ‘lost’ boys started their first day of school. They entered their beginning 5th grade and 8th grade week as brave young budding men without a mother or sister to come home to.  I often wonder the repercussions this instable life will have on stable-craving boys?

Will they have abandonment issues? Will they resent this unconventional childhood? What is God’s plan for two young boys growing-up in this unpredictable web of medical madness?

My boys came to visit us in the hospital. They ended up spending their Saturday night helping a nurse play for hours with a two-year old boy. This precious child is admitted down the hall from us without family and is struggling with a serious form of cancer. Nicholas and Alexander cheered his every step as if it was an incredible milestone and made him belly-roll laugh despite his medical mask muffling the sounds.

And as I watched this unexpectedly miraculous interaction, I stopped worrying so much about God’s plan for my boys. The Lord was raising gentlemen after His own heart far better than I could do full-time on my own. And that brings me great solace and great joy all at once.

Thank you Lord.

Image may contain: 2 people, including Gail Vermillion, people smiling, people standing

“Do not let anyone look down on you because you are young, but set an example for the believers in speech, in conduct, in love, in faith and in purity,” 1 Timothy 4:12.

Love to each and every one of you,

Christyn

 

Why, God?

I cannot deny that today has been hard on Rebecca. She has had far worse days of pain, but not in a while.

Rebecca had a 13-hour infusion today due to the lost blood during her procedure yesterday. We now know the AVMs found in her intestines were contributing to her continual blood loss. They were treated by cauterization and will be re-treated during her next procedure.

It also appears as though Rebecca has a blockage/stricture further down in her intestines. The doctors went as far as possible with the scope but will need a longer device to reach the ‘no-man’s land’ of lower intestines. So, we will patiently wait to address this issue when the appropriate device can be acquired and after Rebecca’s 6 to 12-week recovery.

Many have asked what is wrapped around Rebecca’s back in her pictures posted. On July 4th, Rebecca proceeded to fracture her back sitting on a tube in the water at my parent’s lake home. This prompted a bone scan which showed Rebecca’s bone mass is indeed, quite sub-par. Years of malnutrition and required medications such as steroids have wreaked havoc on my growing girl’s body. We are now challenged with what to do about this new complication?

To make Rebecca’s spinal situation worse, we received a surprise this past spring discovering Rebecca suffers from a serious case of scoliosis. Scoliosis that worsened due to her growth spurt of 7 ½ inches in less than 4 months post-transplant. And by a ‘surprise’, the word denial might be a bit more accurate.

The conversation with Rebecca’s pulmonologist after an X-ray to check her lungs went a little like this:

Pulmonologist – “Rebecca’s scoliosis has significantly worsened per her X-ray.”

Me – “What scoliosis?”

Pulmonologist – “Your child Rebecca’s scoliosis. We have compared her X-rays from previous hospital visits and her curve is significantly worse with a rotation forming in her spine.”

Me – “You must have the wrong child. Rebecca does not have scoliosis.”

Pulmonologist – “There is only one Rebecca Taylor in this hospital that has her pancreas removed. In fact, there is only one Rebecca Taylor in the WORLD who has her pancreas removed. I am pretty sure I have the right child.”

Me – “Maybe they placed the wrong name on this film and then the machine proceeded in erasing multiple organs on this other child’s film. You know computers can do strange things these days…”

Pulmonologist – Silence. (I am fairly certain she was using this silence as a chance to decide which psychiatrist to send to the room and evaluate me.)

Although I knew when looking at my daughter’s back she definitely had a curve, it took an additional full scan and an orthopedic spine surgeon to convince me that Rebecca did indeed have another major anatomical problem to add to her already massive list.

Bless.

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Rebecca’s scoliosis curve is over 40% and is now causing reduced air flow in her lungs. At this point, there is little to be done except stabilize her with a back brace that will not fix her curve but prayerfully keep it from getting worse. Major spine surgery in Rebecca’s fragile body is not an option right now.

In the madness of the past 8 and a half years, it dawned on me we never thought to check the ‘basics’ in Rebecca’s anatomy like eyes, ears and spine. We know every detail possible about how my child’s heart, lungs and kidneys operate, but have no idea if she can see the giant alphabet wall-chart or hear the soft ‘ping’ from padded earphones. And of course, we completely bypassed the touch-your-toes spine check in school.

This is the point where I board the bitterness train…. bitterness that rides in my soul until it runs through my mind and crashes from my mouth in a hot mix of anger and sorrow:

“How is this fair?”

“How is it my daughter has one more massive issue that has nothing to do with the umpteen diseases she already suffers from?”

“What if I caught this sooner?”

“How much more can this child possibly take?”

And then I ask the question at the heart of it all:

“Why, God?”

Like Job-I demand, plead, and bargain for an answer I never receive.

And then I am the one silent. In the presence of the I AM.

Do I have to know the ‘why’ to trust in this Lord?

If the definition of faith is a “firm belief in something for which there is no proof”, then I have no right to demand proof while claiming faith.

My faith must come without the prerequisite of my understanding.

My faith must come without the knowledge of my ‘why’…

And so I ask the ‘whys’.

And then I give up the ‘whys’.

And trust.

Because this God who “gave dominion over the earth” and “endowed the heart with wisdom” and created the exquisite soul of Rebecca Taylor, is a God who deserves my unexpectedly miraculous faith. Despite the unanswered ‘whys’.

Thank you Lord.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal, 2 Corinthians” 4:16-18.

Love to each and every one of you,

Christyn

 

Summer of Fun and Medical Update

This post was published on CaringBridge and Facebook the morning of August 28, 2018.

In typical Taylor family style, we lived our ‘summer of fun’ to its full potential despite the peppering of Rebecca’s hospital visits and her back fracture (more on that later).

Here are a few of the many highlights:

– Rebecca turned 16 and received her driver’s license! Yes, you read that correctly. But that was not the unexpected miracle – the unexpected miracle was me finishing Rebeccca’s request for a British, rose-flavored birthday cake and lavender-rose flavored ice cream.

This required special ingredients from overseas, along with procuring all the math skills I could muster from college calculus II to convert baking measurements. It only took a mere 8 ½ hours to make this oh-so-special birthday cake that no one wanted to eat except Rebecca. People in the United States are not exactly scrambling for rose-flavored foods. As my Uncle John put it, “The icing tastes like Pond’s face cream”. I did not ask how my uncle knew this unique tidbit, but I have the sneaking suspicion he is probably right. Next birthday we are baking American style.

– Our family of 5 got the wonderful opportunity to travel to Costa Rica together for a vacation in the center of a National Park complete with monkeys and sloths.

The boys chose this location based solely on the sloths – seriously. They are sloth-obsessed (strange because they move at the exact opposite pace of a sloth).

Our only stipulation on a trip location was the distance to a major hospital. One in which Rebecca never needed – thank you Lord!

– My siblings and I surprising my father with a 70th birthday party at his lake cabin.

That in itself, was an unexpected miracle as we had to convince my dad to leave the cabin for a day in order to play laser-tag with his grandsons while we set up for the party. My father is not exactly a laser-tag type of guy. Even so, he remained blissfully ignorant to our secret ploy…

– The ever-successful PancreasFest conference and the fruit it is bearing.

– And, of course, the last-minute ‘real’ beach vacation the kids and I experienced with Gail.

It is hard to believe we had time for anything medical in between all that fun? But alas, while some weeks were filled with delight, some were filled with 30-plus hours of outpatient doctor’s appointments, labs, tests, MRI’s, bone scans, and multi-team conferences. And other weeks were filled with inpatient hospital stays complete with more transfusions to stabilize blood levels and IV antibiotics necessary to fight the continual MRSA infections Rebecca battled until end of June.

Please hug the parent of a chronically ill child next time you see them.

And today we face another hurdle as Rebecca undergoes a procedure to remove staples puncturing her intestines. Some of Rebecca’s staples (intended to bind her inner-wounds during transplant) have now migrated into her intestines causing pain every time she eats. This was a problem we discovered last Fall but were unable to locate a surgeon willing to operate on Rebecca’s unique post-transplant anatomy. Rebecca had numerous tear-filled appointments listening to doctors say, “I am sorry, but this case is too complicated for me to feel comfortable with.”

And I understood.

This case is too complicated for any human. But it is not too complicated for God, the God who created my child’s inmost being.

And that very same God found us a vessel who came from Dallas to take on Rebecca’s case. This doctor has experience removing staples endoscopically on post-transplant adults and he will do the same procedure with Rebecca this afternoon in San Antonio at University Hospital. While we realize this option A is only a ‘tip of the iceberg’ fix to Rebecca’s pain factor, any ounce of relief will be heartily welcomed.

Option B addresses the full abdominal cavity pain factor. But surgeons would have to cut back into Rebecca’s stomach in order to remove her growing scar tissue along with her 40-plus embedded staples. A surgery that is fraught with risk in Rebecca’s particular state, not to mention a 6-month to one-year recovery.

For now, we choose option A.

Please pray for our option A. Thank you your steadfastness. Thank you for your love.

We love you right back,

Christyn signature

The Unexpected Miracle of a ‘Gail’

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The kids and I flew out for a last-minute trip to the East Coast to visit their Godmother, Gail.

In my wise-old age of 42, I have discovered I might be a tad, or a lot, like my grandfather when it comes to trips. On one of our vacations to Europe, my Grandaddy famously or infamously (depending on which family member you ask) made us go to 12 cathedrals, 7 museums, and 6 historical markers combined with a multi-hour organ concert.

ALL. IN. ONE. DAY.

I kid you not. I have many witnesses still alive to verify my story.

This sightseeing was accomplished while singing the visiting country’s national anthem in their native tongue, no-less. The learning of the anthem was merely a fraction of our pre-trip requirement studies, along with a detailed book report (more like research paper, but book reports sounded more kid-friendly) on the multiple countries we were about to visit.

Grandaddy’s trips were the only type of vacation I ever knew. And I loved them despite my friend’s constant refusal in calling our family vacations ‘vacations’ and secretly changing the name behind my back to ‘tortuous historical excursions’.

Gail happened to be one of those friends.

So Gail decided it was her duty to expose me and my siblings to ‘real’ vacations. Certifiable, lay on the beach, eat waffles and icecream for supper, never dare wear shoes requiring toes to be covered – vacations. And so she did. But when her godchildren came along, she started to panic looking at our European vacation pictures we took while visiting my sister. It was imperative Gail’s godchildren know what a ‘real’ vacation was, and she intended to remedy this critical problem. And so, Gail rented a beach house in Sea Isle on the East Coast for us to spend 4 days of doing absolutely nothing historical or educational.

While Gail was panicked my children would not experience a ‘real’ vacation, I was panicked my children would miss on the amazing learning experience that awaited them in this new part of the country. So, in the few short hours of the two days we flew in and out of Philadelphia, our itinerary looked a little like this:

  1. A visit to the Liberty Bell Museum and Liberty Bell (the boys tried super hard to touch the bell after hearing Gail touched it as a child – thanks Gail, for almost getting us arrested).
  2. A visit to the Benjamin Franklin Museum.
  3. A visit to the Franklin national grounds complete with historical printing press, post office and architectural elements of Franklin’s original home.
  4. A visit to The Philadelphia Museum of Art (suggested time to allow – 2 full days. We rocked it in 1 hour, thank-you-very-much).
  5. A visit to Independence Hall with tour (We attempted this the first day, but could not get tour tickets. Our second attempt was successful only after driving through 5:00 pm traffic barely making it before closing time.)
  6. A visit to the Rocky Steps and statue.

*Side note: epic (okay maybe not epic) fail as a parent = my children never hearing of Rocky? They wondered why all these strangers kept running up the steps and knocking them down. When I tried to explain what Rocky was, they looked at me like I was hopelessly old-fashioned and assured me a movie about a boxer could not possibly be that good. I wanted to remind them that their favorite TV show was ‘The Andy Griffith Show’ which actually is old-fashioned, but decided against it in fear I might shame them into choosing a more modern favorite show like ‘The Walking Dead’. Needless to say, I made the boys run the steps while I videoed the interaction for their dad who very much knew about Rocky Balboa.

Did I mention all the above was accomplished in less than 5 hours – including meals??

I might have a serious problem.

But the four days we were at the beach with Gail were filled with zero learning mode and full relaxation mode. A victory for my ‘real’ vacation deprived children.

I have said this before and I will say this again, everyone needs to have a Gail in their lives:

A person who spends an entire summer painting and gel-staining ceilings on her back from rickety scaffolds in order to ready our home for our arrival after a long hospital stay…

A person who drops everything to fly from Chicago to Texas in order to be by your hospital bedside and cover you with comfort as you unexpectedly lose your baby daughter…

A person who takes a semester off teaching her university students in order to move into the Ronald McDonald House for months during a Minnesota winter for your daughter’s transplant…

And a person who makes life full of joy with ‘real’ vacations despite my attempts at thwarting them with historical learning experiences.

When you have that ‘Gail’ person in your life, you relish what an unexpected miracle they truly are.

I thank the Lord for our Gail.

“Friends come and friends go, but a true friend sticks by you like family,” Proverbs 18:24.

 

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Rocky Who??

PancreasFest

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PancreasFest took place July 25-27, 2018 in Pittsburgh. The following excerpts were posted on Facebook in July. 

July 24

Rebecca and I are heading to the world’s largest pancreas conference tomorrow morning called PancreasFest. Yes, you read that correctly, Pancreas-FEST. People think adding ‘Fest’ to the end of any word somehow makes the event ‘fun’. Because everyone knows sitting around discussing therapeutic techniques and research on the body’s most pain-ridden organ is FESTive…

Bless.

My husband is having loads of enjoyment making fun of my ‘NerdFest’. He even made it a new Taylor requirement when anyone says the word PancreasFest, everyone in our family must throw their hands in the air, pump them up and down, and say, “Whoop Whoop”! You think I am kidding but, seriously, it is not in my power to make up such madness. Anyone who knows me is well aware I don’t throw my hands up to say “Whoop Whoop” for anything. Therefore, I have been forced instead to refer to PancreasFest in my family circle as “that conference that is coming up about the pancreas”. It is much more cumbersome to say but, alas, saves my dignity.

In Brian’s defense though, the conference planners did not do themselves any favors when they posted on the front page of their website a picture of a man with his head resting on his propped-up hand and eyes firmly closed. This picture just happened to be under the title – “Outstanding talks”. As Brian stated after recovering from a fit of laughter, “Honey, if this is the best picture they could come up with during a lecture, you might be in trouble.”

It is obvious the skill-set of this conference is healing the pancreas, not marketing. I could make a sloth race look more ‘FESTive’.

Back to my original point, I am now an official published medical pancreas researcher. Please add that to the list of terms I never thought I would say in my life. My research project is on the lack of care for pediatric pancreatitis patients and the need for a nationalized central directory of certified pancreatic hospitals and doctors (try saying that 3 times fast). The project was accepted and will be published and presented at PancreasFest (in my mind I was saying “Whoop Whoop” – this is a serious problem). Through this process, we have had the backing of a team at University hospital and their remarkable analyst who was key to assisting me through this project. Even Rebecca pitched in on the research and now may be the only 16-year-old to have their name as part-author in a medical pancreas study.

My request from you is prayers for guidance over the next few days. This conference is comprised with the greatest pancreas minds in the world. I am hoping to meet doctors and researchers that will become instrumental contacts in helping make Rebecca’s Wish a success. We pray they will join our cause, crusading with us for these often-overlooked children.

Our goal is to ease the pain of suffering children. Our goal is to ease the needless lost time finding treatment to this disease. Our goal is to ease the financial burden for families afflicted. Our goal is to ease the ever-present emotional turmoil. Our goal is to heal. That is the unexpected miracle we pray for.

Oh Lord let it be so…

July 26

PancreasFest is living up to its full FESTive potential. Rebecca was exhausted after traveling so she abandoned me after a couple of minutes to face the opening reception alone. Too bad I hate talking (that was a joke). I ended up being the last person to leave for the evening after speaking with many innovative doctors with a goal to help pediatric pancreatitis. Today will be a full day with poster/paper presentations.

I wanted to share Rebecca’s remarkable ‘creed’ for why she wanted to start Rebecca’s Wish:

Rebecca at Gala

I know what it’s like to be in pain and without hope, and I’m not the only one. If I could take that feeling away from every person in the world, I would. While I don’t have that power, I can help change one life at a time through Rebecca’s Wish. With love and support, suffering children can finally be given a chance at a normal life, one without the hopelessness that pediatric pancreatitis entails. For the first time, some of these children will have someone to relate to, and confidence for the future. Something like that is worth pursuing, and together we can end pancreatitis.

Rebecca Taylor

 

July 31

Our presentation – and yes, Rebecca made me do that ridiculous sign with our hands.

So PancreasFest was a huge success. I truly believe just by Rebecca and I being there we raised the FESTivities up a notch…or two… I mean, at least we tried our very hardest to stay awake while the camera man took pictures during the conference for fear it would be OUR face asleep on the front of next year’s website.

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This child was on cloud 9.

 

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Rebecca was very proud to be the author of a research paper.

Everyone who met Rebecca loved her but who could possibly not love Rebecca?? (Said by highly biased mother). Our presentation was also quite popular with lines of professionals waiting to discuss our research. Although slightly controversial considering a couple of institutions defensively felt their care and education for pediatric pancreatitis was perfectly sufficient, over 90% of doctors and medical institutions recognized the severe gap in care for the younger population of this dreaded disease. And those 90 per-centers were anxious to make changes and work closely with our charity to help improve the quality of life for these children.

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After days of discussing lack of pain management for pediatric pancreatitis patients – especially during the current opioid epidemic, lack of diagnosis, lack of research, lack of proper inpatient and outpatient care, as well as lack of post-transplant care, I made an announcement to my UT team that “I am all talked out”.

Seriously, I uttered those EXACT words.

Words that were undoubtedly the unexpected miracle to the ears surrounding me. Especially after the UT research director stated, “I never thought I would live to see the day when you were out of words,” and Rebecca whole-heartedly agreed.

Upon hearing I made this statement, Brian said, “Send Christyn home! Send Christyn home!”. I would like to think this is because my husband missed me terribly, but I have a sneaking suspicion it is merely due to his curiosity in wanting to know what it would be like having a silent wife for the first time in our 19 year and 11 ½ month marriage.

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The conference dinner on a boat – Pittsburgh was beautiful this time of the year!

Prayerfully, God will put my better-than-average propensity for speech to good use because we came out of this conference with numerous projects to start-up, with numerous doctors across the country willing to join our cause, with numerous research institutions wanting to pair with our charity, and with numerous offers from international pancreas societies for me to become a board member. Rebecca’s Wish is well on its way to changing lives.

Thank you Lord.

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We squeezed in exactly 50 minutes at the Carnegie Museum of Art!

Love to each and every one of you,

Christyn signature

PancreasFest Part 1

PancreasFest took place July 25-27 in Pittsburgh.

July 26

PancreasFest is living up to its full FESTive potential. Rebecca was exhausted after traveling so she abandoned me after a couple of minutes to face the opening reception alone. Too bad I hate talking (that was a joke). I ended up being the last person to leave for the evening after speaking with many innovative doctors with a goal to help pediatric pancreatitis. Today will be a full day with poster/paper presentations.

I wanted to share Rebecca’s remarkable ‘creed’ for why she wanted to start Rebecca’s Wish:

Rebecca at Gala

I know what it’s like to be in pain and without hope, and I’m not the only one. If I could take that feeling away from every person in the world, I would. While I don’t have that power, I can help change one life at a time through Rebecca’s Wish. With love and support, suffering children can finally be given a chance at a normal life, one without the hopelessness that pediatric pancreatitis entails. For the first time, some of these children will have someone to relate to, and confidence for the future. Something like that is worth pursuing, and together we can end pancreatitis.

Rebecca Taylor

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20 Years

My husband and I are complete opposites. A lot of people will claim that title but, in our case, it is completely true. From personality traits to politics, and everything in between – we see the world in vastly different shades of color. When I see magenta, Brian sees canary yellow. My husband’s chocolate brown is my fire orange.

Shortly following our marriage, after numerous not-so-subtle suggestions from well-intended family and friends, Brian and I decided to ‘shore-up’ our union by going to a marriage counselor. Make that ‘multiple’ marriage counselors. The first few counselors had us take a compatibility test. When the results were read, one counselor proceeded in informing us that in all his decades of counseling, he had never seen a married couple with such polar-opposite scoring. Another informed us that, had we taken this test before we were married, his recommendation would have been to reconsider making a matrimonial bond.

Brilliant advice…most especially AFTER we said, “I do”.

Bless.

Maybe seeing a marriage counselor was not exactly the wise move we had hoped for??

Because our counselors had no helpful suggestions on how to proceed with this sure-to-be doomed union and I was tired of their slow shaking of the head while asking, “How, exactly, did you two end up together?”, Brian and I set upon our own course – for better or for worse.

Today we celebrate 20 years of marriage.

Christyn and Brian 20 yrs

I offer no wise words of advice on how we got here. There were too many moments I dare not profess, in which I never thought we would make it another day together…much less another year…and far less 20 years.

All I can truthfully claim is, I have never stopped loving the man who told me he was in love with me before our very first date. The man who fathers and adores our three children. The man who fiercely protects and supports our family with every breath in his lungs. And the man who has stood by my side through better and most especially, through worse.

Thank you Lord for the unexpected miracle of 20 years.

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