100 Holes for Histiocytosis

todd's picture

I'm Todd Rohrer, owner of The MacKenzie Golf Bag Company. In 2011 we supported Jim Colton's amazing effort to raise funds for Ben Cox and his family, and we are thrilled that we played any part in helping Ben, and in bringing attention to the idea of golfers raising money for worthy causes. We are big believers in the good that the game of golf brings to society and believe that we are lucky to be involved with a game that is always looking for ways to contribute to the betterment of our world.

Well, The MacKenzie Golf Bag Company has a few golfers hanging around our shop in Portland, Oregon, and in 2012 we are going to do our part again by sponsoring and participating in the Hundred Hole Hike.

I am going to try to play my 100 Holes to raise money for the Histiocytosis Association. Most of you have probably - fortunately - never heard of Histiocytosis, but my daughter knows the word, and the disease, all too well. Our family's is a story that ends well, but way too many children are killed by Histiocytic disorders, many because it can be so difficult to diagnose, and too easy to mis-diagnose. I hope we will be able to help bring awareness to Histiocytosis by raising money to help the Histiocytosis Association spread the word, and to fund research to find a cure.

The following is an excerpt from a speech I gave awhile back. I hope it will help explain why we want to help raise awareness about Histiocytosis. Somewhere there is a family wondering why their child is in pain; perhaps we can help achieve an earlier diagnosis, and just maybe help save a child's life:

"Plenty of people have awakened one day, unaware that by the time they go to bed that night their "normal" will have been turned on its head. I don't know why it happens, or how fate selects its targets, but I know that no family wants to step into the parallel universe of "families with sick children" at any level - and there is no preparing for it.

It happened to us one day a few years ago. It happened after months of trying to figure out what was causing the random excruciating pain that our daughter Brooke was experiencing. We'd noticed Brooke exercising caution in everyday activities. She'd stopped bouncing on her inflatable horsie... she no longer ran, but walked with a careful gait... she was not yet three years old, and she had learned to stifle sneezes. These things were just too painful to do any more.

It happened after our pediatrician helped us rule out appendicitis, after the Orthopaedist said the x-rays showed nothing out of the ordinary, after the Internist explained that constipation really could be that painful (we'll always have that set of x-rays that clearly show our little girl, full of poop)... and finally after the Juvenile Rheumatoid Arthritis specialist realized that Brookie had had just about enough of well-meaning people in lab coats or hospital scrubs saying, "This won't hurt..." Brooke simply wouldn’t let a doctor touch her at this point, so he decided an MRI would be necessary to try to find an answer to her pain.

The months preceding Brooke's diagnosis had been a whirlwind of helplessness and worry. You dads know what I mean: at the most basic level, other than to love your children, what do they count on us to do? We're Dad! We fix things! We can "make it better." But to be awakened in the middle of the night by the piercing screams of your little girl... and to be reduced to your only answer being to hold her, sometimes for hours, until the mysterious pain subsides…that's a helplessness I wouldn't wish on anyone.

Well, the MRI revealed a vertebrae in the late stages of collapse; something was seriously out of whack in our little girl's body. Next was a biopsy of the vertebrae, which confirmed that out of a bunch of lousy options, Brooke's battle...our battle, was going to be against something called Histiocytosis, a rare and serious blood disorder where the white blood cells cluster and attack their host.

Histiocytosis afflicts 5 in a million children every year, and what causes it is not known. So now we had answers, but those answers included a regimen of chemotherapy, steroids, and batteries of tests to track the progress. We'd thought, naively, that a diagnosis was going to be an answer, but of course, a diagnosis was barely the beginning.

Perhaps what we were least prepared for was simply how all-consuming the challenge was going to be. Most of us just don't lead lives that have room to add countless hospital visits, unscheduled emergency room trips, trying to help a sibling understand where all the attention has gone, the stress of all of the medical bills... all of the things that go lacking because all of your focus has to be on your child's immediate future, while all of your regular day-to-day life stuff is supposed to continue uninterrupted."

Our family was fortunate that the Histiocytosis Association existed. They had already helped fund research that contributed to Brooke's story being one of hope. Please help us help the Histiocytosis Association realize their mission: We are dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

https://www.histio.org/

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