Benjamin's Bumps: June 2011

Wednesday, June 8, 2011

Post-poning Chemotherapy

Bottom picture: Benjamin attempting to color at the activity table in the Oncology Clinic.

Top picuture: Our family at Temple Square on Easter morning! That was a wonderful day!

Benjamin has been sick again, the poor guy! He has had a fever and cold symptoms. We spent Friday evening at the PCMC ER for the routine fever work-up. Then throughout the weekend he seemed to improve. Monday morning he was still showing signs of being sick. Finally, yesterday afternoon he had a fever again. We arrived at the clinic at 1:45, just me and Benj. Once again, the usual routine was done including IV fluids infusion, which is always nice because it seems to help him perk up quicker. They discovered from a viral panel done on Friday that he does have rhinovirus again (just a simple cold virus). But this gives them a possible reason for the fever so they don't seem to worry quite so much that he could have a bacterial infection in his port.

As a result of this, his chemotherapy which was suppose to be today will be post-poned until next Wednesday. This will give him a chance to recover. However, he still has a low-grade fever right now and an awful cough. We'll see how tonight goes!

About LCH and Benj

LCH, Langerhans Cell Histiocytosis, is a rare blood disorder that is thought to be like cancer and an auto-immune disorder. It can spread like cancer and is typically treated like cancer with chemotherapy. Histiocytes are a type of white blood cell that over produce in particular areas of the body and then can be problematic in various organs. It can manifest itself in different organs of the body, some being more high risk than others. Benjamin's LCH is in his bones and lungs which categorizes him as having a "moderate" case of LCH. In October of 2010 at the age of eight months, we noticed Benjamin's swollen eye was not improving. We thought it was the result of a fall. However, after visiting our primary care doctor and a CT scan of his head was done, bone lesions (tumors/"bumps!") on his skull were found, including the one under his eye, and we were told he had this serious condition. Benjamin underwent 52 weeks of chemotherapy (Vinblastine/Prednisone) afterwhich he was declared clear and free of LCH in November 2011. We enjoyed two-and-a-half months of health and wellness until we discovered some pain in his side. On January 25, 2012, his second birthday, more bone lesions were discovered, including one on his right rib cage where he had been having the pain! He had 7 or 8 new lesions in his body- three on his ribs, three or four on the parietal bone of his skull, and one on his third left toe. His second-round of chemotherapy included Ara-C and Vincristine, along with Prednisone about every four weeks for four days consecutively each time. This concluded after week 32 (about 7 1/2 months), when his scans were once again clear and he was declared in remission again in October of 2012. In December of 2012, a third recurrence was discovered with two more bone lesions. Benjamin took an anti-inflammatory for one year without any major recurrences. He then had his second port removed in December 2013 and has since had no active disease. We feel so thankful that he is a happy and a healthy little guy! We love having him in our home and part of our family. This disease has brought some new meaning to our lives and we hope we can help someone by sharing it with this blog. Here is his story . . .