Benjamin's Bumps: December 2010

Sunday, December 5, 2010

Good News

We received good news today!!!! Benjamin's LCH is improving! He had his CT scan today (and didn't have to be sedated- a blessing too!) and all of the lesions show good signs of improvement! We were so happy and relieved. Now he will only have to receive the chemotherapy every three weeks. He will take the full dose of the not-so-fun Prednisone again, but it will only be for the first five days after his chemotherapy every three weeks. And we start that tonight.

Follow-up testing will occur again after three more months for the next 12 months. We feel so blessed and grateful today! We know Heavenly Father is watching over Benjamin. He has been so happy and pleasant the last few days. It's nice to feel like we're returning to normal- sort of.

Also, the tree created by Jackie Petersen and friends at the Festival of Trees is just beautiful and so darling! It is on aisle E-17 at the South Towne Expo Center! Jackie even gave Benjamin a token of remembrance- a "Jimbo" the giraffe and he just fell in love with it! It's the same giraffe as the ones on the tree! He loves it and we have watched him several times playing with it's ears or tail while sitting in his crib. It's a precious sight! Thanks Jackie! This has been really fun for our family!

We hope you all have a great Christmas season, since it's December 1st! I'll still send periodic updates to keep you informed but probably a little less frequent. We can't thank you enough for your prayers and kindness towards us. We know this isn't over yet and this may not be over for many years (because of the likelihood that the LCH will reoccur because Benjamin is so young), but for now, we feel so grateful for the good news!

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 . . .