Two days of radiation down. Five more to go. He has two sessions/day that are six hours apart. Before and between the sessions he can’t eat and can only drink clear liquids up until two hours before a session. Liam is doing great. He literally runs to the radiation room saying hi to everyone he sees eager to have his picture taken. He squeals with delight when he sees the radiation technologists and anesthesiologist waiting for him. It’s not until the eight-inch thick door closes to seal my son in a room with dangerous beams of radiation that I can let my guard down and be fearful. And then, three minutes later, it’s over and we’re back to shepherding Liam through this maze of medical treatment and trying to make everything seem normal and turn it into a learning experience. He hasn’t even noticed the new tattoos he’s sporting that help line up the radiation beams. And if he did, he’d probably take it all in Liam style…wanting to know why they’re there. His latest thing is telling us he’s “not in the mood.” He’s so cute about it…we’ll ask if he wants to do something, and he’ll look at us and say, “No, that’s OK, I’m not in the mood.” He also has a very dramatic flare when saying the word, “Really,” when he’s excited about something. He bends his legs, puts his hands on his knees, looks up and says, “REALLY?” It sounds more like, “Willy” which makes it even funnier. He also is very much into Ella and Ella is very much into Liam. They look for and out for each other and are each other’s best buddy. Liam loves to sing “Twinkle Twinkle Little Star” to Ella when she’s going to sleep and she yells his name in the morning to look for him. “We-Um!” “We-um!”
We haven’t been able to write this week. There has been a lot of sad news swirling around us which saps our energy and shakes a shaky foundation of holding everything together. And now that I’m able to see people since chemo is over, I’m having to bridge the gap between cancer world and my world before cancer. It’s harder than I thought it would be. It’s hard when you sense that people don’t know what to say so instead ignore you. It’s hard when someone tries to tell me to look on the bright side when I know how relentless this cancer is. It’s hard when someone asks you to tell them the latest when I’m desperately trying to keep my eyes dry and wish they’d just read Liam’s blog. The easiest thing is when someone picks up from where we left off instead of making me relive where I’ve been. I think people think our story is over. I so wish it was. We have a ways to go, 23 months to be precise before we can breathe just a little bit easier. But we’re making it…one day at a time with some days being longer than others. Liam is just an amazing ray of sunshine who keeps singing “Oh Mr. Sun, Sun, Mr. Mr. Sun, Please Shine Down on Me.” And every morning he proclaims, “The Sun Came Up! The Sun Came Up!”
I find myself every day thankful at how many people have become part of the city of people surrounding and supporting us. This is a long battle. We’re not even five months into it and have a long way to go, but having others on board makes it more bearable. And on the days I’m feeling particularly lonely and drained, I look up at the simple “Get Well Liam!” message spray painted in bright orange letters on the construction draping on the building being erected across the street from Sloan and gain strength.
