Benjamin's Bumps: December 2012

Sunday, December 9, 2012

Awaiting Follow-up Results

We had a great big party in October to celebrate! With a huge, 18-foot blow-up slide, and lots of friends, and cake, we had an enjoyable day! Benjamin had a fun time and even wore himself out to the point that he had to take a little break in the middle of the party. Quietly he went upstairs and turned himself on a t.v. show and fell asleep, unbeknownst to the rest of us! We were so thankful to all of the friends and family that have supported us throughout this challenging time. It was just a great day to celebrate with those we love, and appreciate a big triumph in the the life of our two-and-a-half-year-old!

Now, this week we await results from his three month follow-up appointment on Wednesday. We pray for good news, but have faith regardless of the outcome! Possibly, Dr. F will recommend that his port be removed before Christmas if we have good results (meaning there will be no LCH found).

Thanks for your continued inquiries! We love all of you!

The x-ray table, which Benjamin has a love-hate relationship with!

He now seems to feel quite at home there!

Time to Have a Party!

September 2012

This time we really have a reason to celebrate! We are going to have a party to rejoice in Benjamin's health and life with us! He finished his second round of chemotherapy and is once again in remission from his LCH. The blessings are numerous and we feel grateful!

Of course, we had to have a last trial before the end when Benjamin was hospitalized during his last chemotherapy treatment. His fever from the Ara-C was so high and his blood pressure was alarmingly low, which was a cause to almost admit him to the PICU. Thankfully, he was okay otherwise, so the ICS unit was sufficient for a day. He was just miserable with vomiting and a high fever, which thankfully only lasted 1-2 days. Poor little guy. The hard times have really helped us appreciate the good times! SO LET'S CELEBRATE!!!!!

We also now begin the waiting game to see if this LCH monster will return again. His next follow-up appointment will be the week before Christmas. If all is well, then he will have his port removed that week! We continue to pray . . . and for now, we will just be thankful and celebrate!!!!

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 . . .