This past Wednesday dawned way too early as we got all the kids up, dressed and fed. It wasn't the simple fact that it was 5:30 in the morning, nor the fact that I had been on call with the Northport Fire Department last night (one call at 12:00 so that wasn't too bad) and had slept on the couch.
Instead, I think it had much to do with the fact that Amy and I didn't get much sleep over the last two nights as we were waiting for January 30th to roll around. No, its not an anniversary of any particular event in our lives, rather it was the day that we would be taking our beautiful little boy in to Stonybrook Hospital to have the tumor removed from his shoulder blade. None of us had really slept well for quite a few nights worried about what might happen. William would get up a few times a night not really sure why but it was clear he was more anxious than his nine-year-old brain could rationalize. Amy and I weren't able to sleep for the simple reason that this was OUR little boy.
Those of you who followed our Connor's Army Ride Across America (or CARAAM for short) know that we were riding for the children of Sunrise Day Camp and with the combined efforts of our entire family Connor's Army was able to raise $25,000 for the camp (by the way, if you're reading this its still not to late to donate, all you have to do is click here for more information) and send four kids to a life changing summer experience.
What many of you may not know is how much my children invested themselves in this mission to help the kids of Sunrise. It wasn't just giving up their summer to ride in a van and support their insane summer. Wherever we went they were the embassadors and PR crew par excellence. All it took was for Amy or I to engage in a conversation with someone about what we were doing for the summer, one of the kids would come up and hand them a CARAAM brochure and talk about it too. And more often than not it was William who was being the PR rep.
The kids also had a goal this summer of riding along with me and also contributing to the effort to help the kids of Sunrise by doing a small percentage of what daddy was doing. Sarah's goal was 10% or 400 miles. The boys on their little 20" bikes were going to have a harder time of it and couldn't really handle steep hills so they could only join me when the going was relatively flat so they made a goal of 100 miles - 1/4 of Sarah's goal. They would pedal along as fast as they could move their legs and any time the terrain sloped upwards William seemed to feel it the most. But he was determined that he would get his miles in. He was the one that was the most raring to go and even now when the weather is 20 degrees outside he wants to go on a bike ride with daddy. He loves it and that's why he was so devastated when during our day of riding from Mount Vernon to Alexandria on the Mount Vernon Trail he pooped out and couldn't finish. Amy had to pick him up and take him along and for the next week he would continue to fret about not being able to finish his miles, not being able to get his 100. So during our layover in Swedesboro we made it a point to go on a ride so he could be even with James.
My son is a fighter and yet he is one of the most empathic little boys you'll ever meet. He was so into helping the kids fighting cancer and when we met Elijah Dalton he immediately bonded with him and they began playing as if they were old friends. He understands that children who are sick are just like he and his brother, it doesn't matter if they have no hair or if they have other physical things going on. And he just wants then to feel better. That's why this week has been so hard.
You see, over the summer William, Sarah and James were spending lots of time in the pool. We always tried to stay places where they could swim so we could make sure they got some exercise. With all that time shirtless we became aware that William had a lump small lump on his left shoulder blade that didn't match the lump on his right. We kept an eye on it and it didn't seem to hurt him. But over the course of the summer we noticed it was getting larger. It felt hard to the touch so we new it wasn't cartiledge or soft tissue but we had no idea what it was. We returned to Northport and it still wasn't hurting him so we just kept an eye on it.
In October we noticed it was about three times the size it had been in July so we decided to take him to get it checked out. His pediatrician suggested we go to a specialist and that would suggested another. To make a long story short, after a lot of testing (MRI, Xray, and others) they couldn't decide conclusively what it was but the best guess they had was that it was an osteochondroma. And it looked something like this - PLEASE NOTE, WILLIAMS' WAS NOWHERE NEAR THIS SIZE! It was perhaps 1/4 the size of this one. I only show this picture because for some stupid reason we never took a picture of William's and this one is roughly in exactly the same place.
However, after all the testing they weren't 100% certain. They also said that although they were reasonably sure that it was benign, it would continue to grow as he grew and if it did it could end up matasticizing at some point. It was at that point Amy and I both said "take it out". If there was to be any chance at all that William's growth could become full-blown cancerous we wanted it gone. Added to that is the fact that most osteochondromas tend to be found at the end of growth plates on long bones and this one was in a scapula, not in soft tissue so the doctors are completely sure. All William knew was that he had a tumor and he was going to have an operation which is what I think led to all the sleepless nights.
So on Wednesday Amy took William to Stony Brook Hospital and I dropped James off at intramurals at 7:00 and then I headed off to join them. We didn't have a lot of time with him before he went in and then it was time to decide who would be with him as he dropped off to sleep from the anesthesia. Of course mama won out and she sang him one of his favorite lullabies from when he was little;
Finally, a little after 9:00 they came out to tell us that the surgery had begun. Now it was just the waiting. We posted on facebook, caught up with e-mails and generally tried to think positive, healing thoughts and direct all our energy towards our brave little boy. Finally Dr. Kahn met with us and told us that he got it all, it looked clean, he was 98% sure it was benign but that we would have to wait for two weeks until the pathology came in to be certain.
When they finally let us in to see him it was all I could do to keep from bursting into tears. From all the calls I have gone on with the Northport Fire Department I'm fairly used to seeing folks in hospital beds. A lot of the time I help put them in there. But those are full sized adults and they're not my little boy. As I saw him there on his side with the IV dripping out and surrounded by rolled up blankets to keep him from rolling on to his back I felt so helpless because there was nothing I could do. Because I know my way around the beds I could adjust them and I knew what the SPO2 meant and how to interpret it. It made me feel like I was doing something useful.
William was in a lot of pain and it tore me up to not be able to make him feel better at all. The nurses all fell in love with him and his pink streaked hair (which he explained was for Valentine's Day - see it up top) and he charmed them all. His nurse kept giving him a small dosage of pain reliever every five minutes but finally she had to give him an oral as that wasn't helping. Small wonder since the doctor's basically scooped out the bone. Finally we were able to take him home.
William has spent the last two days at home in his pajamas with mama, watching videos and resting. He still wakes quite often in the night because of the pain and we have to give him doses of Tylenol with Coddeine which only last about three hours. But he is healing and he is getting better thanks to all the prayers and thoughts of our family and friends. But I'm still feeling helpless to do something for our little boy so I have to ride. After a summer spent riding for the children of Sunrise with my own children its now time to ride for one of my own, my little William.
So when I rolled into Syosset High School this morning, this is what the Weather.com listed as the current conditions.
Was I freezing? Definitely. Was the wind blowing faster than I could pedal? Roger that. But all the pain and cold I felt today was nothing compared to the pain my little boy is feeling in his bones. So I ducked my head and just kept pedaling. And if I was hoping for a killer tailwind to help me on the way back that would be a big negatory - I had it right on my beam the entire time. But it was all for my boy, my brave, truthful and unselfish real boy.
So now I need to finish gluing on the weights for the boys' Pinewood Derby cars and get them set for the weigh-in tomorrow. William is going to get out of the house for the first time in three days and I can't wait to hear all the stories of how his friends are going to appreciate his being back.
And now I leave you with the lullaby I always sang for William when he was a little boy, "New Words" by Maury Yeston from the musical In the Beginning as sung by Brian Stokes Mitchell, enjoy.
Stay Well Y'all, and I will see you on the road - I'm pedaling for William.
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