Benjamin's Bumps: Monkey Grins!

Tuesday, May 29, 2012

Monkey Grins!

Thanks to Sydney in Texas and her parents, we received a surprise package in the mail this week! A "Monkey Grin" box full of six monkeys and six lollies, one for each of our six kids perfectly fitting their gender, showed up at our doorstep on Tuesday! This really did put a smile on each of our kids' faces (and I think some tears attempted to be concealed as well).

We have constantly been praying for the comfort of little six-year-old, Sydney who, only two weeks previous, lost her three-year-old brother, Jenson, to LCH. WE were suppose to be sending THEM a happy package, not THEM sending US one. Needless to say, we were so touched! Each of our children were so thankful and carried their monkeys around most of the week! "Monkey Grins" were inspired by Jenson who apparently wanted other "histio warriors" to have monkeys. So Jenson, Sydney, and their parents decided to put into action his great plan! I have learned from reading Jenson's mom's blog, that those family and friends that attended Jenson's funeral brought monkeys to donate! What a positive act of charity in such difficult circumstances. We have been deeply touched by their family!

Now, we have reality to face as we consider another chemo week this week for Benjamin. Honestly, I am dreading it again. But I remind myself that we just need to endure for four or five days and then the poor little guy will be back to his normal self. He makes us all laugh as he triumphantly shoots the basketball in the net and yells, "Oh yah!" We think we have a future Jimmer on our hands- or at least his almost fourteen-year-old brother, Thomas, would like to think so, knowing he has taught him everything he knows about the game! He is an amazing two-year-old ball player! We need some video for future use on ESPN! (Just kidding of course!)

I am also thankful for a day off tomorrow and a day together as a family! This Memorial Day we will honor those family and friends who have passed on before us, and particularly this year we will continue to remember Jenson and his family as they grieve but have given us hope and "Monkey Grins!" These acts of kindness help us to continue to go forward! Thank you to Histio Angel Jenson! Little buddy, you and your good family have inspired us all!

I hope you all have a great week!

Angela

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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 . . .