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

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