Tomorrow, Jax has his third MRI.
Today, Jax and I had a dance party in our living room. We made soft pretzels and a roasted chicken. (Obviously, I cook when I am anxious! It gives me something else to focus on.) We watched Curious George and snuggled up under a warm blanket. We told knock knock jokes and laughed like crazy at the punch line: orange you glad I didn’t say banana?!
It’s been a pretty normal day. Except that I’ve spent most of my time trying not to cry.
I’m not sad, necessarily. I mean, it is kind of sad that my kiddo, who has such a bright spirit, has to under go anesthesia again – for the 7th time – tomorrow. (But at least he’s not having surgery and the recovery will be next to nothing.)
I guess it’s mostly overwhelming to think about the way the results from this scan could change our lives. Possible brain surgery, PICU recovery, chemotherapy, physical and occupational therapy to help Jax compensate for the missing piece of his brain, all kinds of things we just don’t want to have to do…they are all a possibility right now. After an MRI there is no pretending – the results are in black and white, staring you in the face- there is a tumor there. Tomorrow we will know if that tumor is stable or not. This is “scanxiety!” It is impossible to walk into a brain scan and not think of these things. I think it would be weird if we didn’t have these fears.
But I’m trying not to let the scanxiety get to me. I’m trying to take my own advice and focus on the positive.
I am so thankful that we’ve had the option to “wait and see” and that Jax’s tumor did not require immediate surgery/chemo. We are lucky in that respect and for that I am grateful. I know there are other families out there who do not have the luxury of waiting 6 months (and hopefully more!) for treatment.
We are scheduled to meet with the neurosurgeon immediately after the scan, so we will know right away if the tumor has changed. (That’s good. Waiting really is the hardest part for me. I like to have a plan, an action, something to DO and waiting doesn’t bode well for that.)
And tonight we will continue with our regularly scheduled program of silliness and fun. If tomorrow brings bad news, well then, we will deal with that tomorrow.
We arrive at the hospital at 9:00 am, the scan is at 10:00 am, and the neurosurgeon appointment is at 1:00 pm. I’m nervous, gang. We would welcome any extra positive thoughts or prayers you may have throughout the day. ❤
Sigh. Even reading this post turned my stomach, so I can only imagine the depth to your scanxiety! I hope everything goes (is going) well, and that you get some good news. You are due for some!!!!
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Thanks for the encouragement, Alana.
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Love will conquer all!
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❤
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Thinking of you, your husband, and Jax. Saying prayers for good news tomorrow. I hope you’re able to get some rest tonight, and that all that silliness will keep your mind distracted.
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Thanks, Alison. Jax did a little dance show for us that had us laughing out hearts out!
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Andrea, Steve, and of course Jaxson!
Sending lots of happy thoughts, positive energy, faith, trust and most important lots and lots of pixie dust 🙂 I will be thinking of you all tomorrow.
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Thank you!! I’ll always go for pixie dust. 😉
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Just sending my positive thoughts to all of you. I’m feeling the love in your family.
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Thanks, Randy! Jax brings a lot of light to our family, that’s for sure!
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I will be thinking of you and your Family! Thank you for keeping us updated.
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Thanks, Teresa!
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I am in total agreement with all of your emotions, Andrea. Please continue doing all the fun stuff you are doing. You can count on prayers coming from our hearts ♥ and from our home. You are a remarkable family and I love how you all have handled every step of Baby Jax’s life…no matter what. Keep your faith and we will continue to surround you with love and friendship.
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Thank you!
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