It’s hard to believe that an only a year has passed since our son Michael was diagnosed with PSC. To see him today you couldn’t imagine that this time last summer he was in the hospital, suffering from severe abdominal pain, having missed almost an entire year of school due to pain and illness. Even as I write this he is away at a family camp, playing on the beach with his brother, roasting marshmallows, swimming and having all the messy fun that 13 year old boys are supposed to have!
This journey started for us the summer before 4th grade. Michael came down with a stomach bug: pain, diarrhea, nausea. As the illness hung on and his symptoms began to worsen, we took him to our family doctor and he was eventually diagnosed with H-pylori. After being treated over the next couple of months with two rounds of two different antibiotics, some of his symptoms improved, but he remained sick, in and out of school throughout the rest of the year. His doctor felt sure that there was something else besides the h-pylori lingering but we could never put our finger on it.
A year passed, and while Michael was able to complete 5th grade he was never quite himself. He never regained his original level of energy, had frequent stomach illnesses and dropped all activities except school. That summer he again became sick with what we thought was another bout of H-pylori, only this time his symptoms were much worse and more debilitating.
For almost nine months we watched helplessly as our son lay on the couch day after day in severe pain, nausea, and fatigue. Each month brought new symptoms (joint pain, jaundice, weight loss, itchy palms, reflux, nose bleeds) and also differing diagnosis – irritable bowel syndrome, H-pylori, and eventually gallbladder disease. He had his gallbladder removed in late December, and while some the pain from which he had been suffering abated, it was clear that all was not well.
At our follow up appointment for Michael’s surgery, the surgeon suggested we talk with his colleague Dr. Davies. He had been consulting with her on Michael’s puzzling case and she was interested in helping us. We were thrilled that someone would take such an interest in our son and quickly made an appointment with Dr. Davies. We were immediately impressed with her grasp of Michael’s condition – she just seemed to have a hunch about him. Little did we know that that hunch was based on years of study and research on PSC and she was seeing symptoms that were red flags to her. She guided us through a series of tests: blood work, endoscopy, colonoscopy, MRCP and a liver biopsy. All the results supported Dr. Davies original suspicion – Primary Schlerosing Cholangitis.
I remember the day Dr. Davies called me with the final results of all the testing and with the news of Michael’s diagnosis. I had done a lot of reading about liver disease and autoimmune disorders and had actually read about PSC. I knew that this was a serious disease, and that it always carried with it the threat of liver transplant and liver failure. I knew that treatment options were few and not very effective; and I knew that the prognosis was bleak. All this flashed through my mind as she said the words Primary Schlerosing Cholangitis. But before I even had time to process this horrible news, Dr. Davies offered me hope, a foothold, something to keep my world from crashing in – the Vanco study. As she told me about the research she and Dr. Cox were doing and the wonderful results the children were having in the study I was amazed. How could we be so blessed to be seeing a doctor who not only could diagnose my son’s mystery disease, but could actually offer hope of a treatment!
As quickly as possible we entered Michael in the study and within two months his liver enzymes had returned to normal and a follow up MRCP actually showed improvement in the damage to his bile ducts! Over the next months Michael’s symptoms also improved, some dramatically disappeared, while others gradually decreased until one day we realized –we had our son back!
We have not stopped marveling at and giving thanks for all the little things in Michael’s life that we once took for granted. We stop and marvel as we watch him wrestle and play with his brother and remember when the only thing they could do together was watch videos as Michael lay on the couch. We give thanks as we see him thumping noisily down the stairs on his stomach, when not long ago his abdominal pain brought even this stoic brave boy to tears on a regular basis. And we can’t get enough of his sweet smile and silly jokes, having glimpsed a face strained with pain and etched with fatigue for so long.
With grateful hearts we share Michael’s story in the hopes that another boy or girl may also be given this precious gift of health.