Benjamin's Bumps: The Very Beginning

Saturday, October 9, 2010

The Very Beginning

It's been a crazy week for our family and I think I need to bring all of you into the loop because we will need your prayers. We learned this week that our little Benjamin has a serious health issue. What we thought was a bump on his eye from learning to crawl has turned out to be much more serious.

Here's the situation so far:

We know that Benjamin has 3 lesions and/or tumors on his skull which were found on the CT scan Monday (we took him in to be seen by our primary care doctor because we thought his eye was infected or had something in it- well, that we were right about, just not at all what we expected!).

Tuesday they found more lesions on his thymus (near the sternum) in his chest. They also found some small ones in each of his lungs.

The doctors are still considering the same diagnoses as Monday- that this is one of two things: 1- Langerhans Cell Histiocytosis (LCH), or 2- neuroblastoma.

The LCH is not cancer but is a cancer-like disorder. It spreads like cancer and is treated like cancer. The doctors leaned more towards this condition but they still are unsure. The LCH is more likely a 12 month process with chemotherapy. A neuroblastoma is a type of cancer that would more likely be 8 months with chemotherapy. However neither diagnoses is more preferable because one could be at more of an advanced stage than the other depending on his condition. Of course we hope for the one with the best prognosis- something the doctors really won't tell us until they know exactly what the situation is. Right now, Benjamin is doing great and shows no signs of problems other than the bumps on his head.

Tomorrow (Thursday), we will go back for the biopsy. Then we will receive the results from the Oncologist as soon as they get them, which we were told wouldn't be until most likely Monday afternoon.

The doctors were optimistic. Due to Benjamin's age (8 months), he should handle this well and probably come through with flying colors! We feel strongly that Heavenly Father is taking care of us! Benjamin received a special priesthood blessing by his dad and grandfathers on Monday evening. We know that with faith in the priesthood and the gospel of Jesus Christ we can have peace even in these trying circumstances. That's not to say that we think this will be easy. We know that this will be a difficult and prolonged process with serious challenges. But we do know we can get through it if we are faithful! Heavenly Father has taken care of us so often in the past and we believe He will take care of us again.

Benjamin is still the happy, crawling busy-body that he is! And we are so thankful for that!

If you will just pray for Benjamin, we'd greatly appreciate it!

NEVER thought this would be us! What a difference a day makes! We'll try to keep you updated. Thank you so much for your friendship and kindness towards us. We think you are all wonderful!

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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 . . .