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It's difficult to believe that just 6 years ago, our youngest son, Nick, was in the middle of a year's worth of chemo treatments for Langerhans Cell Histiocytosis. LCH is a rare blood cancer where the body makes too many immature white blood cells that caused our son to have skin lesions as well as a gathering of the cells around the stem of his pituitary glad in his brain causing him to have central diabetes insipidus. The Histiocytosis Association reports that "LCH is believed to occur in 1:200,000 children, but any age group can be affected, from infancy through adulthood." I mentioned our journey before in this post, but all the memories of that year come running back to us during Pediatric Cancer Awareness Month, which also happens to be Histiocytosis Awareness Month.
I spent some time earlier this year looking back at pictures from that time because Nick did a report on LCH for school. Back then, I don't think how sick he was and looked registered with us, but looking at pictures like this one just breaks my heart while I think about all he went through.
This strong, amazing boy endured 22 rounds of chemo, hundreds of doses of steroids and other medications, and while the lasting effects of LCH will never be fully gone, he lives each day like no one I've ever known.
(photo credit Dancing in the Rain Photography - Melissa Kettner)
Today, Nick is a wonderful 10 year old and my days would not be the same without him. He's been in remission for over 5 years and continues to be in good health, even though he lives with central diabetes insipidus and a few other minor issues. We still hold our breath a bit when he has blood work done, but so far, things are still looking good. He lets none of this keep him down, and is a shining light in our family.
Not a day goes by that we don't realize how fortunate we've been through all of this. And every time that we hear another family has received the news that their child has LCH, our hearts go out to them. It is in this spirit that we as a family are raising money for the Histiocytosis Association through our donor drive titled Nick's Nickels for LCH.
Throughout the year, our family sets aside any nickels we receive as change and cash them in for a donation to the Histiocytosis Association. We've been saving all year, but this year, we wanted to do even more by creating this donor campaign.
But I still thought that I could do more.
For the entire month of September, all of my patterns are 10% off
PLUS $1 from every purchase will be donated to the Histiocytosis Association through our Nick's Nickels for LCH donor drive.
If you would like to make a donation of any amount, please visit our donor drive page:
Thank you all for listening and for taking the time to read about our experience with LCH. We pray that researches begin finding more answers to why LCH occurs, and that every child diagnosed is as fortunate as our guy. And for our Nick, we hope and pray beyond measure that he has several thousand days to come, and that LCH is nothing but a mere memory in the past.