Talking to our kiddo about tomorrow’s appointment that’s what she said: “you’d want to delay too if they were about to stick you with a needle.” And, she’s right. I would. I don’t like going to the lab at all, and her appointment tomorrow is SO MUCH MORE than that. So, yep, I’d want to delay.
I was encouraging her to think about getting ready for the IV insertion a bit earlier. She’s gotten to the point where she can tell the nurse “I’m not ready, I’m not ready….. ok, I’m ready” It’s great to see her able to advocate for herself, but it feels like it takes really long, and they’re working on a sometimes pretty tight schedule, so I thought I’d try to encourage her to do some of her prepping before we’re in the room. (as if that’s even possible).
As she expressed her frustration with this idea I decided that it’ll just have to take as long as it takes. I’m going to encourage her and be there with her, but I’m not going to rush her. The fact that she can take some time to get herself calm and ready is great.
And, the more I think about it, the more I realize that though this will be her 8th time going through an MRI with contrast, there’s been something different each time. So “getting ready” ahead of time is actually harder than we’d think. Just when you think you know what to expect because you’ve been through it before something changes.
So, instead of wanting her to “toughen up” or some other such nonsense I’m going to remember that she is a ten year old girl who has been through unimaginable trauma in the past 15 months. So, if she wants a few more minutes in the exam room before a needle gets stuck in her arm, I think we can give her that. Any bit of control she can have in an out of control situation is valuable and important.
See, I get nervous before routine blood work. Sometimes even still I may get teary, and chances are very, very good that I’m sweating whatever the temperature is in the room. What she’s going through is so much more significant than that. So, though I’ve been beside her for every needle stick, whether it’s for a blood test, IV, port access, she’s the one that had to tolerate it. So I’ll remind her that she has done lots of hard things already and encourage her that she can do this too.
Here we are the night before scan day, the 2 adults trying to distract ourselves with random TV shows and video games and sharing some feelings on the blog -maybe if I get them out I’ll be able to stop thinking about some it for awhile. Thankfully the 10 year old is sleeping. We’re all 3 looking forward to season 3 of “Bluey” being released on Disney + tomorrow. But we’re still dreading the morning stuff.
Our plan is to drive to the Children’s Hospital where we’ll go up to the Jimmy Everest Center on the 10th floor to see a nurse and get an IV put in to be used for the MRI contrast. If it goes as planned, we’ll get to see a Child Life Specialist and one of their service dogs. The dog being there really does make a difference for our girl. Then, once the IV is in we head back down to the car and drive over to the OU Physician’s Building where we check in for the MRI. She always wants me to go in with her during the scan. That was never a problem until last time. She had to plead our case for me to accompany her because they’d had trouble with other parents being in the room with the machine. In the end it worked and they let me accompany her. Who knows how that part will go tomorrow. Just one piece of the whole we know what to expect, but we don’t aspect to all this.
She also needs a chest x-ray. We think that they’ll just handle that right after the MRI, but we aren’t totally sure about that.
Then, we plan to pick up some yummy ribs and brisket from Leo’s at the Homeland Grocery and head home for a Bluey marathon. She’s hoping for a bundt cake, but Nothing Bundt Cakes isn’t really near the house so I haven’t worked that part of yet. Chances are we’ll have to take a Bluey break and head out for the cake.
Eating, snuggling, and Bluey – a pretty good afternoon/evening plan!
And, we’ll be waiting for results. Her appointment to see the doctor and get results is the following Monday. Yep, 5 days of wondering. 5 days of deciding whether or not to look in the patient portal to see if the results are there. The doctor has encouraged us not to look. That’s really hard.
I did a quick search in my calendar to try to figure out how many of these she’s had. I came up with this one is # 8, #9 if you count that one was both the head and the abdomen. They’ve been at 4 different locations. In addition, she’s had several CT scans, a PET/CT, and x-rays. “Scan” can mean many things. And, until we started dealing with scans because of cancer, I had no idea how much turmoil they can cause.
Scanxiety is real. It doesn’t disappear just because we’ve done this before. Actually, the longer we’re in the pediatric cancer community the more connections we make with others who do get bad news from scan day. We see others celebrating too, but we can’t ignore that not everyone has a clear outcome. And that part is extra hard once you know some of those people.