Grace’s Story

Grace was born a happy, healthy, chubby little girl on a crisp December day. We brought her home stuffed in a Christmas stocking sewn by hospital volunteers just in time for Christmas Eve.

Her crib rested against a shared wall in the bedroom next to ours. We could mark the passing of time, and her development, by the sounds we heard travel through that wall. She progressed from cooing, gurgling and bouncing…to talking and laughing with her stuffed toys…to singing the alphabet. Always, the sounds were happy.

Five years passed quickly; Grace was excited to join forces with the “big girls” in kindergarten. The week before school started, our family decided to take one last summer trip to a beautiful beach on the California coast. Unfortunately, four days later, she started experiencing fevers, diarrhea and stomach pain.
After a call to the water quality control department in the beach town we visited, it was officially confirmed that the water had been contaminated with a bacteria called Giardia. It took six weeks, three rounds of antibiotics and prescription probiotics to get her illness under control. There was one concerning factor, though: Grace never did test positive for Giardia. Exhausted, we were more than happy to accept the inexplicable and put the entire experience behind us. While her symptoms subsided, however, a nagging sense of unease remained.

It was on a beautiful spring morning – April 1, to be precise – that the truth and ferocity of what had lingered within her would hit us full force. It began with a phone call from one of our older daughters, “Mom, you have to come home. There’s something wrong with Grace.”

We rushed to the house only to find Grace lying on the couch, lethargic and apparently unable to walk. We removed her socks and found her toes swollen twice their normal size. Both ankles also looked swollen, as if they had been sprained. Red streaks ran up her shins. Her fever spiked at 106 degrees. Thinking that couldn’t be accurate, we tried several other thermometers. All posted the same, heart rending 106.

That day began a frightening journey that would last months. As time passed, so too did Grace’s typical daily activities. There would be no more running, no more softball – instead, those activities would be replaced with crutches, fatigue, daily fevers and a slow retreat from a normal childhood. Grace endured multiple trips to the hospital, an ERCP, endoscopies, colonoscopies, biopsies of her painful erythema nodosum nodules, and ultimately the devastating diagnosis: Ulcerative Colitis and Primary Sclerosing Cholangitis.

Our once happy girl was in tremendous pain. New sounds came through our bedroom wall now. The sounds that had once been so joyous and carefree were instead marked with suffering. At night, her crying left us heartbroken, while pain management became a constant battle. Tylenol was dangerous to her already damaged liver and Motrin too harsh for a troubled GI tract. Every treatment option we considered could potentially cause her further suffering. The alternatives suggested by the physicians felt dangerous to us as well. The entire experience became intolerable, unacceptable. In desperation, we sought a second opinion.

Armed with volumes of pictures, test results, labs and questions, we wandered into Dr. Davies’ office, looking for answers. Thankfully, what we found changed Grace’s life. In the bleak world of PSC, we had listened to the never-ending comments of “no known treatment, no known cure” or “leads to liver transplant.”

Dr. Davies, shockingly, offered us hope! It came in the form of a trial. She explained the simplicity of it, the potentially beautiful results of it. Her words of encouragement left me stunned – it almost felt too good to be true. Grace went into the hospital that week to confirm the diagnosis. Within days, she was officially a member of the trial.

As some children in the trial do, Grace experienced a dramatic relief from her symptoms almost immediately. Within seven days her sores, joint pain and fevers subsided. Within eight weeks, her labs indicated that her liver enzymes had returned to normal.

The carefree childhood that we thought was lost to Grace came flooding back to her. Her joyful days returned, with a smile to share, hide-n-seek with her Grandpa, dressing up her dog, encouraging her friends, doing hand-stands in the pool, smacking amazing grand slams, and occasionally sneaking a hot fudge sundae while her sisters are still in school.

Six years have now passed and our “Kindergarten Grace” is now a middle school girl… a lively, bright, social, middle school girl.

Sports have remained her passion: Softball is currently the sport of choice. We just recently had the joy of watching Grace try-out for our community’s Elite Traveling Softball Team.  What made the experience especially sweet, was the fact that six years ago, it was a starkly different experience.  Prior to joining the Vanco Study, we watched, with a sense of fear, from those same stands as Grace hobbled around that field. She was unable to keep up with her peers. Her symptoms from UC and PSC made it impossible for her to compete. Grace never made it through her first softball season.

And, then came the PSC trial… and great health and the renewed ability to enjoy life. It is with awe and gratitude that I am able to write:  Grace, a once ailing PSC kid, made that Elite Traveling Team.  No one would ever guess that she is “sick”. Her once tired body is now so strong that she earned one of eight coveted spots. She has never wanted anything more than she wanted to make that team. I believe we have the doctors and the Vancomycin to thank for that.

We cherish the joy we hear daily through that shared wall of ours. It seems as though the burden of pain has been lifted from our child. We are grateful for each vibrant day. At times, it still feels too good to be real. The truth is, however, that a small amount of lingering unease remains. How long this will last, no one can say. As parents, the burden now is ours to carry – until the cure is found.

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