Today was a good day. Yesterday was long.
Let me back-track.
Yesterday we began our journey at Roswell. We arrived at 8:45am and went through the process of talking to a myriad of doctors, shaking hands, verifying medications, setting up anesthesia, getting his mesh mask made (to hold his head down during radiation,) and familiarize ourselves with the process. Ben kept begging to leave. He was tired and just wanted to leave. Andy, Ben and I all left at about 11:45am that afternoon feeling completely exhausted. We felt good, but completely drained.
I had felt nervous about what I would tell Ben, about what to expect. But I decided to take the "less is more" path. I answered questions as he asked them. I was curious to see what he had thought about all of this, so the half-hour drive to the facility yesterday was valuable discussion time.
I told him that they took the bump out of his head, but that there were small pieces left behind. That's why we needed to go to Roswell, to let them give him medicine to help get rid of the extra pieces to be sure his headaches don't come back. The medicine would come through a machine and it would circle around his head, but it would not hurt. And that he would be asleep. He was okay with that. It was also nice to be able to say that he would not be spending the night there, but he would be returning home with us each afternoon. I did not say anything about the hair loss that would occur in a few weeks. That can wait.
I explained we let them put the port on his chest so they wouldn't have to give him an IV. I explained how important it is to us that he is comfortable and not in pain. So having this port will allow them to use it for medicine or to draw blood rather than put an IV in his hand or his foot. That brought tears.
The unknown is always a scary thing. For all of us. He had never allowed anyone to access his port - it hasn't even been in a week - and he was unsure what it would feel like. I didn't have too many answers to comfort him, so I had to end that teary discussion with, "I'm not sure. Let's ask the doctor when we get to Roswell." The tears lasted for a few more minutes, but ultimately ended with a sad, "Okay, Mom."
I think it breaks my heart more when he gives in than when he puts up a fight. My compliant second-born. He hates to disappoint us.
I hadn't anticipated having to explain how long he'd have to keep up this schedule, but he asked. "How long am I going to have to do this?" he asked bluntly. "You'll have to come to Roswell thirty times." His mouth dropped in over-exaggeration. "Thirty times?!? That's almost a hundred days!" He was right. I'm sure that sounds like an eternity to a four-year-old.
But just like when the boys were scared of the monsters in their closet, it's better for us to acknowledge their fears rather than dismiss them. "Yes, there are monsters in your closet. But let's clean everything out, put Christmas lights up and then hang signs that let them know that they are NOT welcome here." For whatever reason, that worked. The signs have since come down, but the Christmas lights are still up. And months later, monsters have not returned.
So I acknowledged his fear. "I know. This is frustrating. And it's gonna feel like a really long time. But this is the best way to be sure the headaches don't come back. And Mom and Dad wouldn't let the doctors do anything unless we knew it was going to help you."
Thankfully, he felt some sense of comfort in order to let us continue.
So yesterday was exhausting. But it had to happen.
This morning was a completely different story. Ben had his socks, shoes and jacket on before I even got to take a shower. "Bud, we won't leave for another half-hour. Do you want to wait to put your jacket on?" He wanted to be ready to leave as soon as we were.
He was a chatter-box on the ride to Roswell bounced into the waiting room. He barely sat in his chair. He laughed, mixing up his name with his brother's and jumped onto Andy's back like a monkey, making the others in the waiting room smile. He was a careless little boy! It was as if he felt comfortable within his territory. He had only been there twice, but he seemed good. Andy and I smiled at each other. Ben was okay. And we both knew it.
Because of the work that was done yesterday, today went extremely quick and we were in and out within two hours. Ben was anxious to leave, so he took his egg and cheese omelet to go! The radiation itself only takes 10-15 minutes. The rest of the time is setting up for anesthesia and then waiting for him to wake up, a time that was much less than expected.
So grateful to be able to come home each day.
Tonight was our first night administering the chemo at home. We decided to mix the powder into some ice cream. I'm not exactly sure what Ben thought about his dad feeding him vanilla ice cream in a plastic bowl with a plastic spoon and a mask and rubber gloves. I told him Daddy had to wear the mask to keep his germs away from his medicine. Our sweet son believed me. I mean, I never gave him reason to doubt.
So many changes, so little time. But I'm so grateful for the grace that God has given our little boy to walk this road ahead. He's carried himself with so much more grace than you would normally give a four-year-old.
And it's all because of prayer. Please keep them coming. We have been the grateful recipients of your selfless intercessions on our behalf.
Day Two is coming. Bring it on.