Moments after our son Jack was born in September we learned that he had a congenital birth defect, a giant melanocytic nevus. At the time we didn’t really comprehend the path that lay ahead of us…ahead of him. We just held on to the fact that in every other way he was normal despite the large brownish/black mark covering 80% of his back. We met with a dermatologist five days after his birth. The information was overwhelming, foreign words to describe completely foreign concepts: melanocytes, cancer-risk, melanoma, neurocutaneous melanocytosis (NCM), MRI to rule out neurological involvement, surgery, tissue expansion, excision (You can read the full story HERE). I left the dermatologist’s office in tears. Shortly after our visit to the dermatologist we were referred to a pediatric plastic surgeon, Dr. Mitchell Stotland at Children’s Hospital at Dartmouth-Hitchcock in Lebanon, NH. He reassured us and gave us a more detailed outline of what exactly we could expect from the removal process. Though it was a relief to have a more answers it was still overwhelming. When there is something wrong with your child the bottom drops out of your world. It’s incredibly difficult. The complexity of the procedures Jack would have to go through seemed too big for this little newborn to face and was too much for my brain and ragged emotions to handle.
On Wednesday Jack had his second and final surgery. The nevus was successfully removed and the “new skin” created by the tissue expanders now covers his back. He will have a very large scar across his back wrapping from one side to the other. We spent one night in the hospital and have been home resting and making him comfortable. By Thursday afternoon the pain seemed much more manageable and was acting very much his usual self.
Jack still has several satellite moles that the dermatologist will continue to watch, for the most part our journey is over: we are done with the surgeries, done with the anesthesia, done with filling the tissue expanders at home, done with the stress of open wounds, done with the bi-weekly four-hour round trip drives for 20 minute visits. But for so many other families who receive services from the CHaD, their journey is far from over…they are not done. Which is why I will run.
On October 20th I will run the CHaD Hero Half-Marathon. Ever since we started receiving care at CHaD I knew I wanted to run this race. I knew I wanted to raise as much money as I possible could so that other families, just like ours, can continue to benefit from the excellent care and support services that the hospital provides. The race raises funds for the care and services provided to the children and families of CHaD, some of which we have benefited from directly. Like Molly’s Place Family Center, which is a resource room and playroom. It provided our family a place to wait for appointments; after a long two hour drive Sophia could play and I could nurse Jack peacefully. The money raised by the CHaD Hero Half-Marathon also provides funds for the Child Life Program which provides toys, books, DVD’s, and special art and pet therapy programs for the little patients of CHaD. And wagons. They supply wagons.
We learned how essential these wagons are on Wednesday. Jack’s original surgery time was estimated to be around 10:30am, depending on when the surgeon finished his first case. It turns out the first case went long–which is completely fine with me, you don’t exactly want your surgeon rushing. So we waited. And the longer we waited the hungrier Jack got. For a while we played in the playroom and that was distraction enough for 45 minutes. Then Mark played the princess guitar and that was distraction enough for all of 30 seconds (although it occupied Mark for much longer).
It got to the point where I couldn’t really be in eye-sight of Jack because he’d fuss louder at the sight of his food source. He was going on 6 hours without food. Eventually, we put him in the wagon and started walking laps around the surgery floor. It worked. That wagon was a life-saver. Jack fell asleep until noon, when they were finally ready for him. And just as Jack was getting prepped to go in, the surgeon’s first case, a little four-week old, was coming out.
Who knew we would need a wagon. And so many other families need those wagons and toys and princess guitars to make a really tough day not-so-tough. Which is why my goal is to raise $5000 for CHaD. It’s a big goal. I’m not sure if its possible, but usually hard things seem impossible before you start working at them. I know that others have gone before me and raised money from which our family has directly benefited. I want to do the same for the families that follow us.
I am also running for Jack. My boy. I love him so stinkin’ much it’s unbelievable. Through this whole experience he has kept on smiling, kept on drooling. He is a tough little guy. He can do hard things. He has done hard things and doesn’t even know it. I want to show him his mama can do hard things too, which is why my goal is to finish in the top five women. Based on last year’s results it would mean running a time of 1:35 or less (a ten minute PR for me). Not impossible, but it will take a lot of hard work this summer.
I want to be a hero, a hero for other CHaD families and a hero to my son. You can be a hero too! Here’s how you can help:
- Donate. You can donate directly on my fundraising page HERE. Little or big every bit counts!
- Share this post on Facebook, Twitter and use the hashtag #chadhalf.
- Run too! If you live in NH consider running either the half or the 5K. Click HERE for more details.
- Track my training HERE and encourage me to chase that PR
Have you ever run for a cause? Do you have any fundraising suggestions? Have you ever set your sites at a 10min PR? How did you go about accomplishing that goal?
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Daily Mile: dailymile.com/people/scanney