Benjamin's Bumps: Progress and Blessings

Thursday, October 28, 2010

Progress and Blessings

This picture was taken after his second surgery when his IV port was placed! He recovered so quickly from both surgeries!

I just want you all to know that Benjamin is doing remarkably well! We feel fortunate that he is happy and crawling all over the house! His chemotherapy has caused him to be more irritable than usual and he also is not sleeping well (of course, neither are we!), but we know this situation could be so much worse!

Yesterday, his chemo treatment went more smoothly than the last because they were able to access his port. With Emla cream (for numbing the site), he didn't seem to feel the pain from the needle placed in the port. He was more bothered by the nurse that was pestering him! The oncologist, Dr. Fluchel, was amazed by the improvement of Benjamin's eye! We continually feel grateful that his eye appears drastically better! The swelling is gone and we can't feel the lesion that was there. We're hoping that the other lesions will show as much positive change when we return for the follow-up testing in 3-4 more weeks!

We also are so excited that Benjamin's bone marrow biopsy results were normal! That is a huge, huge blessing! There are still some hurdles to climb and so we know that we still need your prayers.

Thanks so much again for your prayers, words of support, and acts of kindness! Thanks to ALL- friends, family, friends of friends, and friends of family who have prayed for us! We thank you for putting Benjamin's name on the prayer rolls of meetings, temples, and churches, even from those of other faiths! We are touched when we hear of many of you who have included him in your family prayers too. That just means so so much! We know that prayer is real, that it works, and that Heavenly Father hears them and answers them! So prayers for Benjamin are the best thing that anyone can do for us right now!

It's hard to describe the feelings of love that we have felt from you as well! This hard situation has felt much easier to bear because of our friends and family who have helped to "make our burdens lighter"! It really is true what the scriptures say, that bearing others burdens will make them light. I promise to you that we have really felt that! Our burdens have been lighter because of you! This has motivated us to have more charity and compassion for others and we hope that we will have opportunities in the future to repay you all for the charity you have given to us!

We love you and thank you.

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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 . . .