Five years ago today, our world changed just a little bit. Five years ago, we took our last step towards becoming a regular family. Because five years ago, Josh had a short surgery to remove his port. We had gotten a final vote of confidence from the doctors that he was fine. He was good. He was done. He wouldn't need quick access. No chemo. No anesthesia. No weekly blood draws. And that all meant that they were
sure there was no cancer. And with that, we could be sure too.
In case you don't know, a port is kind of a built in IV access. It looks like a little spaceship with a tube coming from one end. The day after Josh was diagnosed, he was taken to surgery where the surgeon cut a little pocket it for it just under his skin and sewed that tube into a vein in his neck. It was great because it was beneath the skin, reducing the risk of infection and allowing him to lead a relatively normal life with swimming pools and baths. And so for nearly three years, if you looked closely, you could see a bump in his chest. And if you looked REALLY closely, you could see the tube under the skin in his neck.
We had a love/hate relationship with the port nicknamed "Buddy." We loved it because blood draws, IV chemo and other drugs and even anesthesia could be easily done. A quick poke through the numbed skin in his chest, and we could get down to business. But, we hated it because Josh hated it. For almost two years, he screamed every time he was accessed until one time, he just gave up. And the giving up was just as bad as the screaming. Maybe even worse. We hated it because Josh's clogged up. A lot. And that meant a lot of anti-clotting medicine and a lot of re-accessing. And sometimes, if something important was happening (like 24 hour, precisely-timed chemo infusions) we would have to take him to a special room where at least three adults would have to pin him down while a fourth poked him over and over and over. Buddy made our lives easier overall, but on those days, I really, really hated it.
But no matter how much we might have loved it or hated it, it was a physical, you-can-touch-it symbol of the cancer experience. On a day when things were great and he seemed very much like a normal kid, we would catch a glimpse of the bump or the tube and remember, "Oh yeah, that's right....he has cancer." I have said many times that there was good and bad in Josh's experience. And that port, with its good and its bad, represented everything about it. And today, if you look closely there are two barely-even-there scars on Josh's body and a few more barely-even-there emotional scars on all of us.
On that day, I had a tiny Abby in my arms when John asked the surgeon if he could have Buddy. I laughed, embarrassed, because what a silly question! But the wonderful Dr. B, who had put Buddy in three years earlier, ignored me and said "Of course. I'll have them clean it up for you." On that day, while we waited in the waiting room for nearly an hour too long, my anxiety causing Abby's to rise too, we heard a nurse finally say that despite some complications, Josh was fine, the port was out.
It was hard for us to see the port go. It had been a constant companion for Josh, and he was nervous to have it out. We were too. It turns out that his body didn't want to let it go either--it had begun calcifying around the tube in his neck, trying to hold on. That extra hour of surgery had been used to pry that tube out. And that represents our experience too. As much as we wanted to be done, as much as we wanted
Josh to be done, it was pretty hard to let go of the constant reassurance of doctor's appointments and blood draws and being told over and over that everything looked great. It was hard to face the what-ifs. What if he needed medicine and we couldn't get an IV in? What if he needed blood drawn quickly? What if he relapsed? But we did it. We faced the what-ifs head on and headed right out of that hospital that had become a second home.
As we drove home with our very sore little boy, we drove away from the previous three years. We'd be back, for sure. But it just wouldn't be the same. We would be back as one of
those families. One of the families who made it through to the other side. John took the port home and made it into first a necklace and then a bracelet. It is a symbol that helps us remember that on this day five years ago, we stopped being a "cancer family" and started just being us.
