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Meet 2017 Honoree, Nicole Edmunds

My life has so many questions.

I'm pretty sure when Jessica called me last May to let me know that I had been chosen as the upcoming 2017 CCFA Take Steps Walk Honoree, I replied with a question--something like "Are you sure--there are so many people worse off than me?" 

My name is Nicole Edmunds and I was diagnosed with severe left sided Ulcerative Colitis about 7 years ago.  I was 31.  I had spent months trying to ignore what was happening to my body.  

Many years into my career as a math teacher at Spruce Mountain Middle School and a part time dining room manager, it was extremely difficult and exhausting to basically not eat until I got home each day because things were so bad.  This led to me finally breaking down and admitting to myself that something was very wrong and that I could not hang on to any hope that things would get better on their own. 

My doctor once asked me after a colonoscopy, "Nicole, how are you still working?" 

My success with medication has left a lot to be desired.  Everything I tried all ended up failures.  I am currently trying Entyvio infusions.  Meds are a huge challenge for me-needles are absolutely terrifying, and it seems like I will never escape the frequency of this terror.  I have lost track of how many colonoscopies and endoscopies I have had and would hate to tally up the sporadic months I have spent on prednisone.  I spend a lot of time frustrated that the latest meds aren't working, and I feel like I am running out of options before a possible potential surgery.  Will they find a new medication or a cure in time? 

This past summer I was also diagnosed with Lupus--I have added knee draining and cortisone shots to my "been there, done that" list, along with a new medication to help with the Lupus symptoms.

More questions......

I go to bed each night wondering how much trouble I will have standing up the next morning or whether I will be able to walk up a flight of stairs?

Jessica asked me last year, "How are you raising so much money?" 

I don't have all of the answers, but I have a TON of support!  My family, boyfriend,  friends, and coworkers get me through each day.  My gastroenterologist is one of my biggest fans, and I am grateful that I have her in my corner. 

My stubbornness gives me strength.  My ability to fight through even the toughest of days is fueled by my loved ones. 

I have been told me that I am an inspiration to others.  Me? I feel the exact opposite--others are my inspiration.............especially those who are dealing with much much more than I am............to keep fighting. 

 


 

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2017 Pediatric Honoree- Evan Yale

http://online.ccfa.org/gotoEvanYale2017


Evan was diagnosed with Crohns in March of 2016 shortly after his 9th birthday.  However, what we didn’t realize was that the Crohns started at least two years prior. Evan was a textbook second child - little fear, willing to try new things and aggressive on the playing field and helpful attentive and playful in the classroom. Then all of sudden it was as if he hit the wall.  His quick feet and competitive edge turned to reservation and failure to try.  What we didn’t realize was that this was the beginning of his Crohnes journey.

January 29th 2016, Evan started getting inconsistent high fevers and abdominal discomfort in the late afternoon/early evenings.  We waited about ten days before going to the doctors because we knew we would hear, “it’s just a virus.” On February 8th we headed to Maine Medical Partners Westbrook Pediatrics in a snowstorm where the physician’s assistant took it this very seriously.  She rushed us up to the lab before they closed and scheduled an ultra sound for the next morning to rule out an appendicitis.  That evening, the on call physician called to say his inflammatory markers were extremely high and there was an infection of some kind somewhere.  The next day, the ultra sound showed nothing but swollen lymph nodes but Evan’s lower abdominal area did hurt when the tech moved the wand around. 

On the way home, the pediatrician’s office called and asked us to turn around and head to the ER to get a cat scan.  We checked in around 11:30am and left at 8pm.  A few nurses and resident popped in but the ER doctor did not see Evan until 5pm.  Evan like most kids, has a phobia of needles, shots and blood so inserting an IV was interesting to say the least. Then the resident came in and asked Evan to give him a pain threshold from 1-10.  Most young kids do not understand this scale and the significance of this.   Evan gave him a low rating (4) and the resident did not look at Evan’s facial expressions when pushing down on the lower abdominal region.  They asked a lot of questions and looking back asked questions pertaining to irritable bowel disease but remember, Evan did not have the textbook symptoms of that disease. 

Finally, about five hours later the ER doctor blessed us with her presence.  She asked the same questions as the resident.  I did interject to tell her that the resident’s explanation of the pain threshold was not delivered well nor did he look at Evan’s reactions when pressing the area in question.  I told her his pain was much higher than the number than the resident was told. The ER doctor stated it wasn’t an appendicitis but only a virus and he should go home.  “Hmmm,” I said “I don’t think so.  His pediatrician requested a cat scan for a reason so why don’t you call them if you feel differently.”  She responded with, “No, I think I know better.” She even was arrogant enough to say, “She would give her last dying dime that it was a virus.”   My friend quickly jumped in and said her child had these symptoms at this age and strep had attacked the kidneys.  The ER doctor replied,” that’s a fluke and rarely happens.”   I said, “I would love for you to tell us I TOLD YOU SO and it’s just a virus – at this point that would be the best news ever BUT as a parent I am telling you it is not a virus.”  Then in front of Evan and with no regard to the fact he was already scared to death with not knowing what was happening to him, the ER doctor says… "Well, if he gets the CAT scan there is a 1% chance he could get cancer.”  Evan’s grandmother, a nurse herself, mouth dropped.  Talk about unprofessional and poor bedside manner.   Against the ER doctor’s opinion we said we wanted the CAT scan and to no surprise, she didn’t even stick around for the results.  The CAT scan was exactly what was needed to show an inflamed ileum and put us in the direction of a diagnosis.  If it wasn’t for that CAT scan, Evan would not have gotten the diagnosis and treatment he needed.  One arrogant self-center doctor put Evan’s health in jeopardy and is solely responsible for misdiagnosing Evan without a care in the world but a lot of arrogance and I know all attitude.  Please remember to advocate for yourself and others when your gut is telling you something is not right.

Evan was scheduled for a colonoscopy and endoscopy at 1pm on March 14th.  Between the CAT scan and this date he saw his pediatrician two more times and was sent home a few times from school because of fevers and abdominal pain.  Evan had his first experience with fasting and all that was involved with that.  The poor kid was starving and didn’t end up eating for 4 days because of the prepping and abdominal gas discomfort afterwards.   Evan was very pale and lethargic and just wanted to eat and go home.   Then entered Dr. Anna Furr who performed the procedure.  She showed us pictures and she said his insides looked “angry” and immediately put him on steroids for 3 months. 

Dr. Furr immediately squeezed us into her hectic schedule and even saw us during her lunchtime on March 29th to explain what was happening with Evan on and what the next steps could be.    The next step was to swallow a camera pill.  Dr. Furr explained it thoroughly to Evan and that the best case scenario was to swallow it versus be put under anesstia.   Dr. Furr could see that she needed to persuade Evan in this direction and she knew exactly how to challenge him.   All she had to say was … Evan I know of another one your age that has swallowed it and I bet you will want to try it because the one who swallowed it WAS A GIRL!  Game on for Evan – that’s all he had to hear to take on that challenge and practice swallowing (and eating) two Mike’s Ikes candies at a time.  

On May 10th there Evan swallowed the camera pill not once but twice (did I mention they forgot to turn the camera on the first time?)  Yes, so he had to go back a second time and do it again on May 13th with the fasting AGAIN.  The good news is he apparently held or still holds the record for swallowing the camera pill the fastest).  From the camera pill and the colonoscopy/endoscopy they confirmed he had Chrones.  This time last year was Evan’s first chrones walk (not medicated yet) where he was a bit grumpy and bribed his sister into piggy backing him a lot of the way.  By the end of the walk he had a 103 fever – in late June/early July was put on Methotrexate which has been successful to date.  This past November, Evan had a follow up colonoscopy/endoscopy and it showed a clean colon and that the medicine was working.

When undiagnosed, the Crohns took the zest and adventure out of Evan. He loved soccer and lacrosse but missed games and practices, he missed school or was sent home early, and he skipped or came home early from playdates.  But, now a year later, Evan is a brand new kid back to his good ole self.  He is back out on the field playing soccer and lacrosse with a vengeance and loves it.  He is excelling in school and hasn’t been sent home for not being well and he has a lot more fun with his friends now.  With the help and support of Evan’s teachers, coaches, school nurse, friends and doctors they made last year’s journey a little more bearable.

Thank you Dr. Furr for taking the scariness out of the disease and talking at a level that Evan could understand and comprehend.  Thank you for your sense of humor and your diligence in finding the right treatment for each of your patients.  Thank you to Dr. Youth and staff at Maine Medical Partners Westbrook Pediatrics for thinking outside the box and not giving up like that ER doctor.   Thank you for being more like the show “HOUSE”- Well it’s not appendicitis but let’s find out what it is approach. We











 



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