Ben’s Story

Ben’s story is a different one… he developed a rare cancer because he had received a liver donation a few years before.  The fight against this cancer destroy his first liver and he was then not only fighting and getting batter from cancer… but waiting for another donor liver.  His amazing mom had to wait for someone who had agreed to organ donation to head to heaven at just the right time for her son’s miracle.  You would be amazed at how kind and humble and grateful they are… they appreciate life and all of the rough along the joy- and Ben has the best freakin’ smile.

Read.  Share.  Comment.  Please… these are the faces of Childhood Cancer.

Ben’s Story

By His Momma Andrea

Ben’s story isn’t like many others.

He was born full term at a whopping 10 pounds, which he desperately needed since he had liver surgery at 10 days old.  He was born with liver disease. Ben needed a liver transplant by the time he was 6 months old. His next three years were great.  He had some bumps, but we were just so grateful for his organ donor giving him life.  He was healthy, and thriving.  He was learning and gearing up for pre-school.

Ben woke up with a lump in his neck.  It was odd, but he wasn’t in pain or anything.  We took him to the pediatrician who was certain it was just an infection.  He put him on strong antibiotics and told us to come back on Monday; this was on a Thursday. The weekend was full of fun and Ben wasn’t annoyed at all by the lump. Monday came around and we went to for a re-check.  The pediatrician was still pretty calm, but ordered an ultrasound of his neck for the next day.

I took Ben by myself for his ultrasound, we were sure it wasn’t anything.  After the ultrasound the radiologist came in to talk to me.  He asked me a ton of questions and asked if I knew what PTLD was. PTLD is a type of lymphoma that only happens to transplant patients. Of course, we knew what it was, it was in the big book from transplant under very rare things that can happen. He told me that he was certain that’s what it was and he called the transplant team right away.

Soon enough we were in Boston. Tons of tests, tons of images, and more doctors we had never met.  By Day 5 inpatient, we had a diagnosis and a treatment plan for Burkitt PTLD, a very rare and aggressive form of lymphoma. So rare that Boston Children’s / Dana Farber had never treated it.

That’s where people go for second opinions, what do you do if they haven’t treated it?

He started chemo the next day, and the next months were a blur.  He was treated from early November- end of March. He was only home for 3 weeks during his treatment. His treatment ended early, he was in advanced stage liver failure. His scans looked “good enough”.  We went home and were told they would re-scan in 4 weeks.

The good news.

Ben is 2 1/2 years in remission, and 10 months (today) post second liver transplant. He is thriving, and getting ready to start Kindergarten.  Even though, he hasn’t had the easiest life; he makes the most of it.  We are eternally grateful for the amazing care he receives, and his two donor families for giving him life.

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