My Story

In 2007, my younger son began to feel ill. This mostly showed up as fatigue, and it wasn’t overly worrying. Tom had started a paper route in early September, and being in seventh grade, was also was on a Junior High schedule (earlier bus pick up), so his being tired seemed to fit. But soon this tiredness became more consuming.

Another point of concern was his appetite. For what felt like forever, Tom had been more on the picky side. He was always thin, and as a toddler he couldn’t quite make it to the normal weight percentile for his age. Tom had also been a month premature, and at times, we thought of him as a tad delicate.

And during his middle school years, he went through a period of random nausea with occasional vomiting. Very random and not extremely often, it really couldn’t be attributed to anything. The oddest “symptom” was that around the same time, his feet would get itchy. This discomfort also spread to his calves now and then, and sometimes his fingers would also get itchy, and in his words, “puff up.” Near the end of sixth grade, Tom had scratched his feet and legs so much that he picked up a cellulitis infection.

By October, Tom was clearly eating less, resting more, and just didn’t look great. The school nurse told us that he was beginning to spend more time in her office, and she recommended a trip to his doctor. We agreed.

Even now, as I write this in 2015, it is sometimes hard to revisit this next part of the story. That’s when all hell broke loose.


Tom recuperating from major surgery

I brought Tom to the pediatrician in the second week of October. He did a urine test and didn’t like what he saw. He sent us next door to the hospital lab for blood work. Eight vials of blood later, there was an answer.

The doctor called either later that night, or the next day. Tom’s liver enzymes were way out of whack. The numbers were so abnormal that Dr. D. practically had his other hand on his Rolodex to find a pediatric hepatologist at Boston Children’s Hospital.

By Friday, Tom, Dave, and I were headed to Boston. Tom had an appointment with a Dr. J. and an ultrasound was scheduled for directly after that, but first was more blood work.  Dr. J. got the point quickly. She asked Tom about his stools, were they pale? She pointed to a beige cabinet in the exam room. “Pale like that?” “No” was the answer. She then asked Tom, “your feet, do they get itchy?”

I think all three of our jaws dropped open.

Tom said yes, and she had him take off his socks, and she raised his pant leg to see the red marks from scratching all over. She did a quick exam of his abdomen, finding his liver and spleen enlarged. We spoke for a while about what this might all mean. Tom was going to start some medications to help with the itching, and also to maybe take some strain off of his liver.

Next was the ultrasound. Here I’m going to quote from a personal essay I published at Blogcritics Magazine: “Tom was lying in the dark, with an ultrasound technician and a radiologist frowning at a monitor, measuring dark spots on his liver. I never realized I could hold my breath for so long.” (for the full essay, which is essentially the first year of his story – click here.)

As it turned out in the next few weeks, even after the ultrasound, an ERCP, a liver biopsy and  finally a seven hour surgery, there was no clear diagnosis. Tom clearly had a form of biliary cirrhosis, but what was causing it wasn’t definite. The surgery, a roux-en-y hepaticojejunostomy, was a re-routing of his bile flow. It was successful, but was not a cure to what was essentially liver disease. Here are a couple of images below to clarify the whole anatomy and surgery.roux-en-y hepaticojejunostomy:

GI and Liver Anatomy                       roux-en-y hepaticojejunostomy

Liver disease! In a 12 year old boy! Like many, I thought liver problems were relegated to older people, or those who drank too much.

Tom’s story continued on for several more years, and I’ve written about this for various organizations and events. It is lengthy and complicated, full of frustration, sadness, joy, enlightenment, kindness, and it is still ongoing. I will add more details, the good and the bad, either on this page, or on the blog, or of course, in my book.

But the reason for this site, is to offer a place of refuge, education, amusement, grace, and hopefully Sanity.

Shanti and Shalom