Christyn’s Corner – Rebecca's Wish

PancreasFest 2018

Jeff Goldblatt — Mon, 13 Aug 2018 19:34:35 +0000

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. (PancreasFest took place in Pittsburgh, PA July 25-27, 2018)

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.

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.

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.

Love to each and every one of you,
C

Written by Christyn Taylor, President of Rebecca’s Wish

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Surgery Update: Rebecca Taylor

Jeff Goldblatt — Wed, 29 Aug 2018 01:37:49 +0000

A new day brought a new medical hurdle for Rebecca who just emerged from surgery following 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 discovered last fall but her family was 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.”

Tonight, we have been asked by Rebecca’s mother, Christyn Taylor, who is the President of Rebecca’s Wish to share this update with you about Rebecca’s condition:

“Rebecca just got out from anesthesia but has not awakened yet in PACU. The doctors (a team of 4) were able to remove 5 staples puncturing the intestines at the first transplant surgical anastomosis (rejoining of her intestines during transplant).

They were unable to reach the second anastomosis area due to her tortuous anatomy. They will have to order a special device to go further (one that the entire city of San Antonio does not have) and repeat procedure in 6 months in order to remove those staples.

Rebecca also has AVM’s (look up – too hard to explain) throughout her intestines which are causing a large part of her bleeding. This is due to damage incurred from the transplant. They cauterized numerous vessels and will go back in and re-cauterize during her next procedure. Prayerfully this will slow her need for constant infusions.

Now we wait on pain control and see how her body responds.

Thank you for your prayers.

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.”

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Rebecca’s Holiday Wish Comes True

Jeff Goldblatt — Wed, 09 Jan 2019 19:06:36 +0000

Our unexpected miracle = $33,039!

$33, 039!!!

That’s the magic number raised by Rebecca’s Wish Adopt a Family holiday fundraiser through online and mail-in donations.

Yes, you read that correctly – $33,039. Wow!

Our lofty goal at the onset of the fundraiser was $10,000. I had to prep Rebecca’s expectations by stating holidays can be hard financially – $10,000 might be a lot to ask this time of the year…

But Rebecca was undeterred. She wanted to help 10 families, so we were going to ask for $10,000.

But $33,039??

Beyond our expectations.

Because of YOU, we get to adopt 33 families in dire need.

Because of YOU, 33 hurting families will have hope.

Because of YOU, 33 hurting families will know they are not alone.

Because of YOU, 33 hurting families will feel loved.

All because of YOU!!!

With sincere love and gratitude to each and every one of you,

Christyn (and everyone associated with Rebecca’s Wish)

P.S. Our featured photo shows Rebecca with Oki, a 16 year-old from Brownsville, Texas who suffered from pancreatitis for 3 years, before she was diagnosed with the disease. Oki, over the holidays, was hospitalized in San Antonio for an endoscopic ultrasound to track the progress of her symptoms. Her family drives 4-hours to San Antonio any time Oki has a flare-up of her pancreas and requires medical assistance. Her family incurs financial costs during these flare-ups in paying for food, gas and hotel stays and the hardship of lost wages.

To learn more about Rebecca’s Wish Adopt A Family Fundraiser, KENS5 aired a story about Rebecca and posted a story on-line about our campaign.

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On a Mission

Jeff Goldblatt — Tue, 03 Mar 2020 21:27:26 +0000

We are on a mission to find a cure for children with pancreatitis. In March, Rebecca’s Wish Founder, Rebecca Taylor and Rebecca’s Wish President, Christyn Taylor received a tremendous honor. They were granted the opportunity to testify before a U.S. Food and Drug Administration panel at the first-ever pancreatitis, externally-led, patient-focused, drug development meeting. What follows is a string of reflections on their journey.

“Rebecca and I are on our way to Washington DC!! We are panel speakers representing pediatric pancreatitis. Rebecca’s Wish is pairing with the National Institutes of Health (NIH) and other national leaders to make a difference. We will petition the U.S. Food and Drug Administration about the necessity for drug-targeted therapy for the pancreas. As of right now, our only option is opioids to ease the pain.

We want better.

Please pray for our journey, and we will keep you updated on our progress!” – March 1, 2020

“While on our DC trip to improve pancreas care, Rebecca decided to bring pancreas awareness with a twist of fun….

Before our rehearsal today, we got to see a few important National sites. Rebecca brought her pancreas pillow, affectionately known as Pierre, with her in the pictures. We started the day walking and ended the day in a wheelchair, but Pierre the pancreas pillow stayed by Rebecca’s side.

While viewing our pictures, please remember to pray for children with pancreatitis. Tomorrow is the big day and we are praying for an unexpected miracle! Love to each of you, C & R” -March 2, 2020

“Behind the scenes photos from our rehearsal for the 1st externally led Patient-Focused Drug Development Meeting on Pancreatitis. (PFDD) Rebecca was “phenomenal” according to her proud mother, Christyn Tomorrow’s unprecedented panel before the U.S. Food and Drug Administration will feature Rebecca’s Wish along with Mission: Cure and the Living with Familial Chylomicronemia Syndrome. HUGE thanks to the sponsor of this meeting: National Pancreas Foundation.” – Rebecca’s Wish Facebook Page: March 2, 2020

“We did it! Rebecca and Christyn made history by testifying before an U.S. Food and Drug Administration panel at the 1st ever pancreatitis externally-led patient-focused drug development meeting. The entire testimony is more than 4 hours, but we took the liberty of giving you the highlight times of Team Taylor.

2:50:00
3:20:00
3:31:00
3:36:00
3:51:00 ” Rebecca’s Wish Facebook Page: March 3, 2020

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Shared Suffering

Jeff Goldblatt — Sat, 11 Jul 2020 20:54:45 +0000

My nephew Caleb was diagnosed with leukemia a little more than 15 months ago. I cannot tell you the shock of knowing another child in my family would have a journey of living in hospitals. Another child in my family would have illicit chemicals running through their body with extreme side effects. Another child in my family would grow up while being tethered to an IV pole.

It did not seem fair. I mean, if these life-threatening pediatric diseases did have to exist, then surely they should be spread out into different families. Certainly not within the same lineage??

Over time though, I started to see a beauty of sisters sharing a similar yet unthinkable journey. My sister Jenny and I could fall apart together, be angry together, and rejoice at medical victories together.

But most importantly, we understood each other. I understood the world Jenny was walking into, and now for the first time in my family, someone else understood mine.

This bond of shared hardship is instrumental to survival and ultimately healing. Because God knows in times of crises, the suffering need each other.

“Mourn with those who mourn,” takes on a whole new level when the one mourning with you actually knows how to mourn.

Click here to listen to a podcast of my sister’s journey this past year. It is beautiful and incredibly heartfelt. And for those of you who have followed our family the last 10 years, you will see traces of similarities: seeing God through the pain.

This podcast is part of a series called “The UpBeat, Powered by Coach Art.” It focuses on families of chronically ill children – cancer, diabetes, autoimmune, etc. It brings together those who need hope and understanding during their hardest moments.

Please listen, it will be your unexpected miracle of the day.

Love to each of you,

My nephew, Caleb & his mother/my sister, Jenny

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Rebecca’s Holiday Wish

Jeff Goldblatt — Sat, 12 Dec 2020 17:16:10 +0000

One of the beauties of us transferring from the Dallas hospital to San Antonio is re-engaging with the needs of our Rebecca’s Wish patients. Dozens and dozens of pancreas families have poured through our hospital doors since our arrival.

We have a first-hand view to their suffering, and our current pandemic magnifies their struggles. Some of our pancreas families have been hospitalized more than 200 days. One sold their only family car to pay for medical expenses. Some of our families ride a bus to San Antonio from out-of-town, because they cannot afford hospital parking and are now trapped in a hospital without access to basic necessities. With the Ronald McDonald Houses temporarily closed due to COVID, impossibly large hotel and food bills pile up. And on top of all that hardship, most of our families are dealing with lost wages from either the pandemic and/or a parent’s inability to leave the bedside of their sick child.

For Rebecca and I, one of our favorite things is meeting these families and giving them gift baskets filled with snacks, knick knacks, and a check from Rebecca’s Wish for a $1,000 family sponsorship. Because of all the COVID restrictions at the hospital and all the safety precautions (not to mention Rebecca’s illness), we passed our baton to the physicians caring for these pancreas patients. The doctors tell us that the parents are blown away by the financial help and that many weep with gratitude. We have given away so many sponsorships to pancreas families over the last several weeks, that I physically ran out of checks and had to rush order more!

Because the need is so great, Rebecca came up with a wonderful idea to start a Holiday fundraiser as we did 2 years ago. She named it our Hospital Holly Campaign. We have an incredibly generous donor that is willing to match up to $25,000 of all donations coming in!

Help us make this season an unexpected miracle for hurting families.

Love to each of you,

C and R

Link for donations below:

https://app.hellofund.com/rebeccasholidaywish

Here are a few photos of the gifts that will be given to Rebecca’s Wish patients. Thank you to Kerry and Jessica Mims for bagging everything up so nicely! The items in these bags were generously provided by Adam Berg, who collected donations for Rebecca’s Wish for his Bar Mitzvah.

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Disability Awareness

Jeff Goldblatt — Sat, 31 Jul 2021 21:12:57 +0000

The end of July wraps up Disability Awareness month. I have thought a lot about the disabled population this month (well, really I think about them every month). I am the mother to a disabled child, I am president of a non-profit for disabled children, and I am surrounded by disabled children and adults while living in the hospital. I hear stories. I watch other’s reactions. I live the highs and lows of parenting through this foreign, handicapped world.

I have come to the conclusion that Disability Awareness month is not actually for the disabled. People with disabilities do not need a month to be reminded of their affliction – they live with their impairments every moment of every day.

Disability Awareness month is for the “abled”. Those blissfully unaware of the plights disabled people face. The “abled” do not worry if there is a wheelchair ramp leading into a building. The “abled” do not have to count the number of steps to their destination. The “abled” do not fear mockery that ensues walking out of a handicapped parking spot or constant questioning because they “look too good to be sick”. The “abled” do not suffer the time-suck of normal activities requiring 3-5 times more effort and thereby exhaustion. The “abled” do not spend inordinate amounts of their life planning schedules around medication dosing, doctor appointments, treatments, and expected or unexpected hospitalizations.

Disability Awareness month is most definitely for the “abled” – a time to keep an open mind to a different perspective. A time to ask questions and educate. A time to learn and grow.

Our eyes were opened because of Rebecca’s condition. But if we did not have Rebecca, would we have the extreme, empathetic bent toward the disabled community we do today? Sadly, I think the answer to that question would be “no”.

Because of our daughter’s illness, I am forever thankful Rebecca exposed our family to a whole new population of remarkable people. A population of people that do not need pity, if anything, these resilient humans deserve our utmost admiration, our kindness and when necessary, an extra hand (or leg) of support.

Thank you Lord, for our disabled community and the richness they add to our collective lives. Our unexpected miracle.

Love to each of you,

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Pierre the Pancreas

Jeff Goldblatt — Mon, 02 Aug 2021 02:34:40 +0000

Pierre, the Pancreas has been a part of the Taylor family for a few years now. As you may know, Rebecca affectionately names her diseased organs. Pierre is her pancreas. Collin is her colon. Adam is her appendix. Stephen is her spleen. And Lucy is her small intestines (of course, Lucy does not fit the alliteration pattern, but Rebecca’s young cousin, Lydia, named it Lucy).

These names were born from the problem that ensued from discussing private medical issues in public. Rebecca was tired of the looks people gave her when giving us an update on her colon – I mean, what teenager wants her classmates to know about her colon issues? Instead, when her colon became Collin, her high school classmates thought she had a really mean boyfriend that kept misbehaving. I would not be surprised if someone secretly reported Collin to Bad Boyfriends Anonymous…

When Rebecca was hospitalized, a friend gave her a plush, stuffed pancreas. Yes, there exists a stuffed pancreas in this world – although I am not sure who thought there was a market for stuffed organs?? Of course, this pancreas was named after her lost pancreas – Pierre. And Rebecca, being the perpetual, ever-walking billboard for pancreas disease awareness, decided to tote Pierre with us everywhere she went. This became a tradition on all of our trips and significant life-events. But this tradition did stop with just Rebecca. Her other chronic pancreatitis friends received their own stuffed pancreases and are starting to take photos.

And now, I want to let you know that Pierre will become the new face (or toy) of pediatric pancreatitis.

Rebecca’s Wish plans to give our pancreatitis patients their own Pierre the Pancreas. The photos of Pierre will be posted on social media to raise awareness about this unrelenting disease, a disease many children suffer from, and yet, so little is known. Rebecca’s Wish intends to find a cure for pediatric pancreatitis with the help of Pierre – one photo at a time….

You can follow Pierre and his travels on our website and our social media platforms. We have even created a new Instagram channel for Pierre @pierrethepancreas. We intend to use Pierre to communicate and to educate as well as provide you with with a good dose of laughter.

Sincerely,

Christyn

Beach in Florida

Bella with Pierre at Beach in Florida

Hannah with Pierre

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Rebecca’s Wish Welcomes Camp Hope

Jeff Goldblatt — Thu, 09 Sep 2021 02:46:36 +0000

Attention all kiddos with pancreatitis! Have you dreamed of going to summer camp and never felt it would be possible in your life because of your pancreatitis?

Well, dream no more. Rebecca’s Wish – in partnership with National Pancreas Foundation- will be hosting a camp in the summer of 2022 specifically for children with pediatric pancreatitis. And the entire camp. WILL. BE. FREE! We’re calling it Camp Hope, and here is a link to a video with Rebecca’s Wish President Christyn Taylor with more about Camp Hope. Please stay in touch with Rebecca’s Wish for more exciting news about the Camp as we get closer to next summer.

Meantime, we’re kicking off Camp Hope with an exciting virtual event on Saturday, October 16th from 12pm – 4pm Eastern Time. We’re hosting a day of fun for your children, and showcasing a conversation with one of the top researchers in the field of pediatric pancreatitis for our first-ever “Camp at Home: Pediatric Pancreatitis Family Day.” The virtual camp will be hosted by The Painted Turtle, a SeriousFun camp founded by late-actor and philanthropist Paul Newman. (SCROLL TO BOTTOM OF THIS ARTICLE FOR SPECIFIC INSTRUCTIONS TO SIGN UP FOR OUR VIRTUAL CAMP ON 10/16)

“We were really hoping to start Camp Hope this past summer,” stated Rebecca’s Wish President Christyn Taylor whose daughter Rebecca founded the nonprofit in her name after her long and painful ordeal with pediatric pancreatitis. “And obviously, because we weren’t able to do that (because of COVID-19), we didn’t want to wait for these kids to be able to meet each other.”

Program Highlights Include:

A half-day, virtual Camp at Home experience for the entire family.
A Camp at Home Care Package sent to your family in advance of the camp session.
Online and offline program opportunities.
Your favorite camp activities for your family to enjoy together, including a campfire, arts and crafts, singing, dancing, and more!
Specialized times to connect with other children and families in cabin groups, meet with medical specialists, and share with other parents during a Parent Discussion.

What: Camp at Home: Pediatric Pancreatitis Family Day

Join us for Pediatric Pancreatitis Family Day! This Camp at Home event is free for children/youth with pancreatitis. This is an event you won’t want to miss!

When: Saturday, October 16, 2021: 12pm – 4pm EST

CLICK HERE to Sign Up: thepaintedturtle.org/apply

HERE ARE IMPORTANT SIGN-UP INSTRUCTIONS

Under How to Apply – click on “Create a New Campsite Account”.
Fill out the “New Family Enrollment for The Painted Turtle” form.
Next, it will take you to the Dashboard. Click on add option for “Camp at Home: Pediatric Pancreatitis Family Day.” Then click on Save and Continue.
Fill out the “Enrollment questions + additional options” form.
It will then take you to the four Standard Forms that need to be filled out. Please fill these out ASAP so your application can be processed. To ensure guaranteed delivery of home kits, please fill out by September 25th.

For any questions regarding the registration process, please email Carlie Green, Camp Admissions Manager at carlieg@thepaintedturtle.org

For questions related to Rebecca’s Wish, please email us: info@rebeccaswish.org

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Lessons From Camp Hope…

Jeff Goldblatt — Wed, 20 Jul 2022 17:02:45 +0000

One of our break-out sessions at Camp Hope consisted of a reverse role-play in which the doctors became the patient, and the patients became the doctor. The children were instructed to say what they wished their doctors would say to them in a hospital setting.

Pretending to be patients, our doctors wrapped in a quilt from a sitting position while the children stood over them with a clipboard donning a “lab coat” (we did not have a real lab coat, so we used our doctor’s over-sized button-up shirt with a GIGANTIC Texas flag on the back. Nothing like showing these Ohioans a little Texas pride…..).

I knew this would be a great exercise for the children, but I never dreamed the lessons I would learn from their interaction.

These hospital veteran patients between the ages of 8 and 15 asked freakishly precise medical questions while dispensing advice:

“What number are you on a pain scale and which medications work best for you? We don’t want to give you something that makes you worse.”

“Your lipase and amylase are high which means you have pancreatitis, so we need to get an MRCP of your abdomen. This means taking a picture of your tummy.”

“You need an IV for fluids and medications before we can get you a central line. But don’t worry, we will place the IV on the left-side of your arm so you can still do schoolwork with your right-hand.”

It was fascinating watching these children in their element. But what struck me was not the seasoned medical jargon coming from these young children’s mouths. OF COURSE, these children would know what medical questions to ask. Some have lived more days inside a hospital than out.

What struck me was the sincere desire for a personal, compassionate connection from doctor to patient.

Without fail, EVERY child started their exam with an empathetic statement:

“I am sorry you missed your soccer practice today.”

“It makes me sad you are back in the hospital and hurting so badly.”

“I know you don’t want to be sick, but I am here for you.”

They never started their conversation with medical questions.

Never.

They started by offering sympathy.

I am not sure how many of you have spent a considerable amount time in a hospital, but I can assure you, offering sympathy to patients with each (or any) interaction is a rarity. Even with the best of doctors. Life in a hospital consists of teams rounding in and out, focusing on the problems at hand. It is the doctor’s job to “fix” the patient.

Most specialists take their job very seriously while concentrating on the facts.

These children KNOW doctors are there to help them. Yet, having a doctor check on their physical constitution was secondary.

Checking on their feelings was their number one priority:

I am sorry….

It makes me sad…..

I am here for you….

So many times, when a loved one is in crisis, we want to be the “doctor” to their problem. We swoop in to try and fix their pain, fix their ailment, and fix their heartbreak. But the core of what those suffering need most, is a mere acknowledgment of their hurt:

“I am so sorry you are going through this; please know I am here.”

Such a simple yet profound reminder that we are called to love one another first. Because love is the greatest of all…..

Thank you Lord for the unexpectedly miraculous lessons these children continually teach me.

Love to each of you,

Christyn

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