Scanxiety

February 2019 MRI

It was February, and MRI time. Scans are scary for anyone but when you have cancer it is another level of scary. You are checking up on a monster that is trying to kill you or in our case, our son. LJ had scans about every other month since June, it’s part of his clinical trial protocol. With his recent shrinkage he had been moved to every third month and February 26th was the first third month scan. 

Scan anxiety presents itself much like regular anxiety but with heightened symptoms. My personal symptoms were worrying, unmanageable agitation, feeling on edge, excessive irritability, tense muscles, problems with sleep, rapid heartbeat, shaking, chest tightness, and probably a lot more. I have dealt with anxiety my entire life, but the trauma of LJ’s diagnosis had finally brought my illness to the light. And during scan time I would feel all of the symptoms HEAVILY for about two weeks prior to scans and leading up to scan results.

We closed on our house February 15th and began work on the 21st. We didn’t stop working until we had to drive down to Cincy for MRI. Renovating a home was a cure for scanxety. I really hadn’t even thought about it, well it was constantly on my brain but as far as major anxiety symptoms I wasn’t showing any. Praise God!

A few hours after getting keys, the hallway looked like this!

It also helped that LJ was doing unbelievably well. The oncologist has said from the beginning, if he was doing well on the outside, let her take care of the inside. If LJ isn’t symptomatic it really didn’t matter what the MRI shows. Ultimately it didn’t matter at all what the MRI shows, God is in complete control of LJ’s tumor and would care for my son better than I ever could. So I just hung onto Isaiah 41:10 with all my might.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

The children’s hospital is usually great about scheduling the little guys very early in the morning so that they do not have to fast as long. They have to be sedated for MRIs. This scan was not the case. His port access was scheduled for 10:15, MRI at 11:15 and he actually went back around 12pm. He was only allowed clear liquids until 9:15am, then nothing. So breakfast of champs over here! Popsicles, Jello, and Sprite!! 

I put his EMLA cream on (the stuff that numbs his port) and we loaded up around 9am!

I was dreading the morning of the MRI because a fasted 3 year old is not a good time but God was so good to us. LJ was in the best mood and happily playing in the car during the hour drive to Cincy. 

We got to the hospital and everything went as smoothly as possible! LJ drifted off to sleep and did great during the MRI!

We had clinic the next day and we were thrilled to learn that LJ had a stable tumor!!

The DIPG tumor was now measuring…
  • AP: 3.3 cm, previously 3.1 cm
  • TR: 4.4 cm, previously 4.2 cm
  • CC: 3.6 cm, previously 3.6 cm

Two measurements were bigger and that was terrifying, but the team assured us that there were areas of necrosis, which meant dead tissue! This could make the measurement of the tumor look larger due to inflammation. 

There were no new areas of enhancement. And his ventricles were stable in size!

Such good news! 

LJ would be starting cycle 10 of the clinical trial and have another scan in May! 

We could breathe a bit easier and enjoy Spring and renovating our new house! 

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