Benjamin's Bumps: One year ago today!

Tuesday, October 4, 2011

One year ago today!

Mangum Family BYU fans with Brigham Young himself!

Benjamin, our HopeKid, and his daddy sporting our new HopeKids t-shirts!

Our first HopeKids event! We joined HopeKids in June of this year. It is a fun non-profit organization for families with a child that has a life-threatening illness. We get to do fun activities and this was their annual fundraiser and 5K race. Doug, Thomas, Maddie, and Nicholas all ran the race. Me, Macey, Maile, and Benjamin participated in the kids walk.

Benjamin, our smiley 20-month-old BYU fan!

Hello Family and Friends!

One year ago today, our Benjamin was diagnosed with LCH! Our family is celebrating today with lots of gratitude and prayers! We feel thankful that Benjamin's health is so much improved from last year and that he will soon complete his chemotherapy, assuming all continues to be well. We are grateful for his great medical care- medications, doctors, nurses, and hospital staff. The research that has been done on histiocytosis is effective and ongoing! We are thankful for the knowledge gained by scientists to know how to treat his condition (we have been told that only 15-20 years ago, they didn't know how to treat histiocytosis).

I want to especially thank you all today for your kind support, service, and friendship during this past year! We have felt your love and prayers, and as we have said before, they have meant more to us than you probably know.

Most importantly, we feel thankful to our Father in Heaven who has watched over Benjamin and taken such good care of him! We owe all of our praise and thanks to God and we know that He will continue to watch over Benjamin as we complete his treatments. His final chemotherapy treatment is scheduled two weeks from tomorrow and then three weeks following that, he will undergo more scans. Assuming we receive good results from the scans, he will then be able to have his port removed! Then the waiting game begins to see how well he does off of therapy!

Today we just feel thankful and we are celebrating his health and blessings!!!!

Thanks again to all of you and we hope you all have a wonderful day!

Angela and family

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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 . . .