No words any parent wants to hear

When parents are expecting a new baby and are asked what they’re hoping for (usually in reference to a boy or girl), you’ll most likely get the response, “we’re just hoping for a healthy baby.” It’s what every parent hopes for, a happy and healthy bundle of joy. It’s what my husband and I had hoped for and were blessed with two healthy and happy little boys. But while our boys continue to be very happy, we discovered this year that one wasn’t quite as healthy and it was the last thing we ever wanted to have happen to one of our children.

I wish that I could say that our story was rare, but all too often, much more than I would ever want to know, parents just like us are hearing the words “your child has cancer,” and you are forever changed.

My little Nicholas before his 8th chemo treatment.

In our Nicholas’s case, the diagnosis was Langerhans Cell Histiocytosis.  While some oncologists debate whether or not LCH is a cancer, it is a condition where his white blood cells multiply and, if left untreated, would cause tumors and lesions that could cause death.  His treatment protocol includes steroids and chemotherapy, so we’ve quickly become acquainted with the nuances of cancer treatments for our particular situation.

Like I said, I wish that our story was unique, but we sit in waiting rooms at the children’s hospital with parents just like us watching our little warriors battle just to have the chance to live that happy, healthy life we so wished for before they were born.

We are fortunate in the sense that we caught Nick’s disease early before any tumors or lesions could start to form and his chemo treatments are all outpatient.  He’s able to continue on with this year of his life with certain limitations to make sure he doesn’t get too sick.  His LCH causes him to have Central Diabetes Insipidus which may be a long term effect, but with great treatment and management from his endocrinologists, we’re hoping that he is able to manage this just as someone with diabetes mellitus (blood sugar diabetes) would.

We’re almost 4 months into Nick’s treatment and hope to have this behind him by next summer with only follow ups in the future to make sure it doesn’t reappear in his life.  We still have some time to go, but we’re taking things a day at a time and doing what we can to make sure he is comfortable.

For so many others, the prognosis isn’t as good and the journey isn’t quite as smooth.  Many turn to family and friends for support as well as online groups and support groups through hospitals.  If a family is as fortunate as we’ve been to find a great children’s hospital for their child to receive treatment from (in our case, it’s Children’s Hospital of Wisconsin), they’ll find that they, too, are a great source of support.  Everyone, from the nurses to the techs to the doctors and any other staff you come in contact with knows that whatever journey your family is on isn’t the easiest you’ll have in life and do what they can, no matter in what small way, to make it just a little easier.

September is Childhood Cancer Awareness Month (as well as Histiocytosis Awareness Month, awareness color blue) and I felt it was important to share our story as well as make this Ribbon Magnet Thursday a part of it.  Show your support for families going through this time in their lives.  Even the smallest bit of support can make a world of difference.

And for all the families who have a little warrior in their lives like our Nicholas, may their medical treatment be effective, may their rehabilitation be swift, and may this be just a bump in the long road of their life.  We also remember those little angels who are no longer with us, never forgetting their fight as well as the joy and love they brought to so many.

Cure Childhood Cancer Yellow Ribbon MagnetCure Childhood Cancer Ribbon Magnet

Our Cure Childhood Cancer Ribbon Magnet is manufactured and printed in the USA. We print on premium quality, super-thick (.030) magnetic material with UV protected inks. Magnet measures 3.5″ x 8″. Be sure to remove, clean and reposition your magnet weekly.

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