We had our first visit to Roswell today in order to register and meet with anesthesia. We'll have a simulation of the treatment on Monday, 2/24, and then radiation will begin on Tuesday. Chemotherapy will be administered at home on the same days as treatment in a crushed-pill form.
I'm still not sure how long we'll be able to keep Ben from hearing the "C" word. Cancer. He knows that word. He knows what it does. We've talked about it quite a bit over the past few years, as the thing that took their grandma home this past October. They saw it overtake her body and make her weak. We were at her house for dinner a few nights before she had passed while she was under the care of Hospice. She could barely walk. She wasn't making sense. She just stared into space while her husband tried to feed her teaspoonfuls of the soup we had brought. She fell on her way back to her bedroom, but my husband caught her. And my sons watched.
We were at the funeral and encouraged my boys to see her "old body" laying in the casket. She wouldn't need it anymore in heaven. She had inherited new legs, new body. She was now running free for the first time in years. We talked a lot about heaven. About dying. About our guarantee that we would join Jesus in heaven someday. Both of my boys asked Jesus to live inside their hearts last April when my own grandfather died at the ripe old age of 97 that spring. They wanted that guarantee that they would never again be separated from Jesus. And what a joyful day their spiritual birthday was!
So, yes. They know all about dying. About cancer. I still don't feel prepared on how to answer those questions from my inquisitive four-year-olds when/if we have to cross that path.
You see, I am a truth-teller. Especially with my kids. Ben had a reputation at Children's of being a really smart kid. They'd say, "Okay, buddy, I'm just gonna take my little hugger and squeeze your arm a little bit." Ben would look at them with a doubtful stare and say, "Do you mean you're going to take my blood pressure? To see how my blood is flowing?" They'd look at him in shock as if he had just cracked their locker combination.
But my kids trust me. They look to me for answers. Questions in the hospital like, "Mom, will this hurt?" "Does this medicine taste bad?" or "Will we be able to go home tomorrow?" were like daggers through my heart. My poor baby. I was devastated that these were questions that he even had to ask. But there is no way in the world I could lie to that boy. He wanted to know the truth. Even when he didn't like my answer, at least he knew it was accurate. When I had to respond, "No, you'll need to stay in the hospital for ten days," he would just hang his head slightly and say, "Okay, Mom."
At one point, he had an intense fear of his IV. The sensation of medicine moving through his veins was almost too much for my little one. He would scream in protest, thrashing in the bed, and yelling for the nurses to stop hurting him. Definitely one of my lowest points as a mom. After the medicine had made its way through the IV, the nurse and I talked to try and make a plan for when he needed to receive his next dose just three hours later. "It's only 1 mL of medicine," she told me. "If we just hold him down, it would take just a second and it would be over." "No," I said immediately. "He trusts me. And I'm gonna need that trust to get through the next few months." She agreed to let me try my way. I talked to Ben and he agreed to take the medicine orally if they would flavor it. And he did.
At the midnight visit, he woke up to administer three rounds of medicine - by himself - and then peacefully laid back down and went back to sleep. And that's how he has continued to take his medicine, from that point forward. He's the one that pulls the trigger. It's just about the only control he has these days. But he does it.
He trusts me.
I can't even tell you what an awesome compliment and burden that is.
Thankfully, the mediport they inserted this past Wednesday should help alleviate the stress that comes from painful IVs during radiation. That will help.
Now, how do I begin to tell him he'll need to go back to the hospital? For every weekday for the next six weeks? To be put to sleep for 15 minutes of radiation and then another pill at home? That he won't be able to go to preschool with his brother because his treatment will be at the same time? And he will possibly lose some of his hair?
Good thing I've got two days to think about that one.