Scanxiety

Trip finished another round of chemo on Saturday morning. We are all hoping and praying this will be his last. He has scans on Thursday of this week. Believe it or not, he has x-rays, MRI and a PET scan all in one day. We have fought for this to happen for over two years now so that we limit anesthesia days and it’s finally happening. The downside is that they could only make it happen if the scans are in the afternoon, which means a very long day for Trip. He can’t eat after midnight, so I imagine he’ll be a little grumpy. I always have to remind myself that he completed a 12-hour water deprivation test when he was much younger and first diagnosed with DI, so in comparison Thursday should be a piece of cake. (Pun intended since I promised him he can eat a cupcake after his long day – maybe it’s a bribe but I don’t care.)

Trip finished chemo Saturday morning at 1:00 a.m. I couldn’t sleep after, so I got online to waste time and ended up in the histiocytosis support group reading posts and making myself crazy. Post after post was about how LCH returned within months of getting off chemo. Some parents even had their child’s port removed (which is what Trip wants more than anything) only to have another surgery to put it back a few months later to start chemo all over again. That wasn’t exactly a helpful sleep aid. Basically, I’m scared the scans won’t be clear, but I’m also scared they will be good and Trip will get off chemo only to have LCH return. I can’t be happy, huh?

I blame my poor online reading choices on the upcoming scans. I know all the statistics and I know exactly what to be scared of at this point, but I still sat there and read for a couple of hours. It’s hard to put into words what scans actually do to me. There is a certain amount of hope accompanied by unreasonable amounts of fear along with a myriad of what-ifs.

I know this lesson. Why can’t I live it? I know living in the past and remembering how hard it has been watching Trip battle this disease is no way to live. I know that fearing the future will only rob me of today’s joy and power. I know that living in this moment only is where I should focus at all times. I think I do a good job of that most of the time… until scan season (it’s a week but feels like a season to me).

We have had some great moments to live in recently. Trip started soccer and is having a ball even though he doesn’t understand or follow any of the rules. The team manager told the boys to kick the ball and in typical Trip fashion he yelled, “We’re trying LADY!!” He’s not the best player on the team, but he’s definitely the most enthusiastic. Trip also had his wish granted by the Make A Wish foundation. His wish is to go to Disney World. They brought him a Mickey balloon and told him he will get to go… months from now. Trip is into instant gratification, so the sentence didn’t mean much. His wish-granters must have anticipated that because they had a huge fire truck come to our house as part of his special day. Trip’s friend Carter was able to be with him (Carter had his Disney wish granted last year) and our neighbor Michael joined the fun. (Michael was probably the only neighbor who enjoyed the commotion!) The boys had a blast. They explored every inch of the fire truck, ambulance and chief’s car. They loved to ring the (very loud) bell on the front of the fire truck. He had so much fun that the firemen coming to his house could have been his wish, but there is more to come!

I hope I don’t have anything to update until next week after his follow-up appointment. No news is still good news, so I want to get through the scans and have a weekend of fun. Trip’s first soccer game is this weekend and the Fogleman family will be here to visit. We have so many blessings to be thankful for and so many memories to make.