ISPP 2015

Career Opportunities in Pharmacy
UI Stead Family Children’s Hospital 2019 Kid Captain: Charlotte Keller

– He said to us, “We have good
news and we have bad news. “The good news is, Charlotte
does not have leukemia. “The bad news is, Charlotte
does not have leukemia. “Leukemia has a cure. “We could fight to fix her leukemia. “CRMO does not have a cure, it has a hope “of remission, but there is no cure.” (calm music) As an infant and very young toddler, she would spike very high
fevers just sporadically out of nowhere. And she was very uncomfortable, you could tell her level of discomfort. She just very adamantly
started complaining about pain in her right thigh. She woke up in the middle of the night and screamed out in pain
because her leg hurt so bad. That morning I took her to an urgent care, they did x-rays, I was waiting to hear that my baby had a hairline fracture, instead I heard, “This
x-ray is very weird.” Which led to seeing what we would now know as our new normal, a very large lesion through Charlotte’s pelvis and right hip. For 12 weeks Charlotte endured every test, every image, every type of
lab that could have been done. After many reactions to
many different medications, her father and I just said, “Enough.” We went ahead and accepted
the diagnosis of CRMO. And from that point on, we had to accept all of these painful
days and painful nights as our new normal because that was now
Charlotte’s new normal. CRMO stands for chronic recurrent
multifocal osteomyelitis. It’s a genetic, auto-inflammatory disease. Her inflammatory system kind of battles with her immune system and the end results are these lesions through her bones. These lesions have taken over her hips and her pelvis, some of the lesions have caused bone expansion or bone bulging that is absolutely just debilitating, it immobilizes her. It is a disease of exclusion, they have to rule out everything else. Her local rheumatologist referred us to the University of Iowa and he said, “If you’re willing to make a short drive, “there is someone who
sees many, many children “with CRMO.” The fact that she had
several patients traveling to see her was already showing us a light at the end of what we thought was gonna be a very
difficult tunnel to navigate. Our very first visit to University of Iowa actually came at a very
fragile time for Charlotte. She was literally on the floor. She couldn’t sit up, her dad and I had to carry her everywhere she went. So we loaded her up and we drove over. When we got here, they
were anticipating her. And the minute she was in a room having her vitals done, Dr.
Ferguson was in that room with us. She immediately called for labs, she wanted imaging. She personally escorted us, she personally went through the hospital and found some soup for our daughter, she brought it to the
room, she sat with us. She waited for those labs to come back. And it wasn’t until she
knew that our daughter was going to be medically stable that night that she went home. And from that moment on, we knew that we were in
the absolute best place we could have possibly been for her. Shortly into Charlotte’s CRMO diagnosis, there were things that
didn’t really coincide with the CRMO. We addressed these concerns
with her care team, immediately they identified
the primary possibility was EDS, Ehlers-Danlos syndrome. CRMO is a one in a million diagnosis, EDS is fewer than 200,000 cases a year, but it is more common. It’s a connective tissue disorder that affects your ligaments, your tendons, your joints, your skin. She bruises very easily. Her ligaments and her
tendons don’t hold her joints in place the way they should. She also is overworking that joint by just walking normally. It’s very important for Charlotte to be seen by a team of specialists because her disease is encompassed
so many different parts of her. I hope that we can achieve remission for her CRMO and that we
can achieve a daily balance with her EDS. Charlotte. ♪ ♪ ♪ ♪ ♪ ♪ ♪ ♪ ♪ ♪ ♪ ♪ Seeing Charlotte never back down from what she has to do. She is resilient, an absolute warrior. She defines the word warrior. She has absolutely taught
me that perseverance really is a matter of perception.

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