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Patient Stories

Tom Williams
 

A Mother Travels Life With Her Son as He Battles Liver Disease. Family and Faith Help Pull Them Through.

Below is a glimpse into the life of Tom Williams, as told by his mother Mary.

There’s a lot I could tell you about our 15 year-old Tom. How he is so damn stubborn and persistent. How he wants to be a video game designer, and at one point he begged me to pick up books on gaming design and C++ programming when he was about 11, even when I knew that the material was way beyond his (or mine or my husband’s) grasp. Or how he campaigned for a cat so vigorously, that of course we had to visit the shelter and adopt one.

I could also talk about how Tom cares about everyone around him. There was a time he kept reminding me to get a nursing home address for a former paper route customer of his. This woman had fallen in her home and needed to have full time care, and she wasn’t even particularly friendly to him, he simply felt bad for her. Or when just the other day he asked me to stop the car as we were leaving our street, just so he could pick up our neighbors errant garbage cans and lids and move them ALL to a better spot on their driveway. In the rain. What a kid.

Or I could tell you how about all the trips to Children’s Hospital for ultrasounds,  an ERCP, liver biopsy, colonoscopy, endoscopy, upper GI x-ray, blood transfusions (three so far), times spent in ICU, (three times), bone density test, one major surgery and several other surgical procedures. And the nasogastric tube he endured for over three months to help him gain weight. And of course, the dubious achievement of being placed on the waiting list for a liver transplant.

But what haunts me the most is the overwhelming and relentless drain of chronic illness. No matter what the cause, whether it may be cancer cells gone awry, a dodgy liver, childhood epilepsy, poor kidneys, juvenile diabetes, or Duchenne Muscular Dystrophy – it affects families, sometimes silently but always severely. Dealing with many, many medications and the various dose schedules or trying to wade through way too much insurance paperwork is exhausting. And even when your child is feeling relatively ok, or is in remission, there is still emotional exhaustion.

And if they actually feel ill? Missed school. Missed social events, missed family parties, no sleep, no appetite. Of course, one or both parents are expected to hold down full time jobs, with some semblance of sanity at the workplace. What about siblings? They need nearly as much as attention as the sick child, they have new worries now too. “Will she die?” “Will I catch something?” “Why can’t he play with me?” I know I’ve neglected my other son on occasion, and I can never get that time back. Parents scramble to keep everyone’s spirits up, meanwhile hoping for some private time so they can just break down and cry for a while.

I’ve drawn a sad but accurate portrayal of Tom’s life with liver disease, but we keep reminding Tom (and ourselves) that this is just one chapter in our lives. A pretty bad one, but we will get through it because of faith and family and various sources of support, especially our wonderful new friends at the American Liver Foundation.