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A little detour for Histiocytosis Awareness Month

As some of you may have heard, September is Childhood Cancer Awareness Month. If your life or the life of someone you know has been touched by a pediatric cancer, you know how difficult and and devastating it can be. It's the equivalent of having your head crashed between cymbals and yet, as a parent, you still have to hold it together and take care of your little one during a most difficult time.

Our family is one of of those families.

My youngest son, Nick, was diagnosed with Langerhans Cell Histiocytosis just before his 4th birthday. It is a rare cancer where his body made too many immature white blood cells that caused him to have skin lesions and also gathered in his brain around the stem of his pituitary gland causing him to have central diabetes insipidus.

I know what you're thinking. Langerhans-what? Crazy, right?! We thought so, too.

There is no known cause for this disease. There is some research that has shown it being traced to toxins in the environment, family history and geography, but it's not shown in every patient. There are doctors and researchers who are looking into genetic links as well but as of today, we still don't have answers.

Our Nick was fortunate to not have the LCH affect his bones or organs other than his brain. We caught it before the cells could form a brain tumor. We are VERY anti-brain tumor. A year of chemo and steroids and he was declared cancer-free just after his 5th birthday. He's now 3 years post-treatment, charming and rambunctious as ever, and giving me more gray hairs with every turn. We couldn't be happier.

Now with that said, we know how fortunate and blessed we are to have this as our story since we were destined to have LCH be a part of it. Hearing the stories of other LCH families and those with other histiocytic disorders who had to bury their children is heartbreaking. So while we're sitting in the land of remission, the families currently fighting the fight and grieving their lost children are not far from our hearts.

I'm sharing this with you because it's not only Childhood Cancer Awareness Month but it is also Histiocytosis Awareness Month.

Through the Histiocytosis Association, my family is participating in a little fundraising drive to help support funding for research towards finding better treatments as well as identifying the cause of histiocytic disorders. We're not doing an ice bucket challenge or anything (my husband flat-out said that he would NOT shave his head nor dump ice water on himself no matter how much anyone asked), but if you'd like to contribute to our campaign, here is the link to do so:

http://histio.donordrive.com/campaign/histio-warrior-nick

LCH and other histiocytic disorders are what they call "orphan diseases," meaning that they are very rare, occurring in less than 1 in 200,000 and there is not often funding allocated for treatment and drug research. But that tide seems to change just a tiny bit every year as more and more of us have the conversation. I hope that I've started one here with all of you.

Thank you to everyone for listening to our story. Feel free to share this post with others to help spread awareness about Langerhans Cell Histiocytosis and other histiocytic disorders. I appreciate all your support!

If you are a family whose lives have been touched by LCH and you happen upon this post, please feel free to contact me through this blog if you'd like to talk and share your experience or even if you need an ear to just listen. Like I said, every family who went through this and is going through what we did is very close to my heart.

We thank God every day for a happy and healthy Nick.

For more information about Histiocytosis, please visit the Histiocytosis Association website at https://www.histio.org/.

#langerhanscellhistiocytosis #childhoodcancer #histiocytosisawareness