One of the many new words that parents learn when they enter the childhood cancer world is scanxiety – the very real anxiety that parents or caregivers experience before an upcoming MRI scan. If the child is older, sometimes a tween or a teenager, they may feel it as well. For me, my son was only two years old when he was diagnosed with AT/RT, an aggressive high-grade brain tumour. An emergency CT or MRI scan is usually the first diagnostic step to confirm a tumour. Since CT scans are faster, emergency rooms often choose them in urgent situations., and you never really forget that diagnosis day. Ever.
With pediatric brain tumours, MRI scans continue throughout treatment and even after treatment ends, and so does scanxiety. They are usually scheduled every three months, and the scans become less frequent as the child moves further into no-evidence of disease (NED) status. Younger children often need sedation because they cannot stay still long enough for the procedure. If sedation is required, parents are given detailed instructions about fasting and preparation. After the scan there is a recovery period, and the child can go home when the medical team is confident that they are fully awake and stable.
In our case, the MRI of the brain and whole spine took around one and a half hours. The days leading up to each scan were filled with worry. I used to think about the same questions again and again – What if something new shows up? What if there is tumour regrowth? Prayers helped, but holding onto hope is hard when you know that the odds are stacked against you.
When the scan results show the magical words “NED”, it felt like I could breathe again for the next three months until the cycle began all over again. It truly felt like breathing in installments. Those one and a half hours while Rishaan was inside the MRI room were always the longest for me. I often grabbed a coffee, sat by a window and tried to listen to music just to steady myself.
The anesthesiologists and nurses knew him well because he was there so often. It was reassuring for I knew he will be taken care of well, and heartbreaking at the same time for he had go through so much. At first, he resisted every time but slowly he became used to it in a way that no child ever should. Although it never became easier for me to see him taken into another room and sedated. Watching him disappear behind those doors felt like something inside me tightened every single time. But seeing him safe afterward and getting to hug him brought so much relief that words can’t explain. And then comes the long wait for results -usually 24 hours for the report but longer for tumour board to discuss on the results and outline the next steps.
For parents facing scanxiety, here are a few gentle suggestions that may help:
Create your own small routine for scan days – It can be something simple like carrying a favourite snack for later, listening to a calming playlist or wearing something that makes you feel grounded. Familiar routines offer a sense of control when everything else feels uncertain.
Talk to someone who understands – Connecting with other parents in the same community helps because you do not have to explain your fear. They already know how heavy it is.
Let the medical team support you – Don’t be afraid to ask questions and clarify doubts. Advocate for your child for you know him best. Reach out to child life specialists or nurses if you feel so.
Protect your energy on scan day – Do not force yourself to work, cook or take on extra responsibilities. Lowering expectations for that day can ease the emotional load.
Be kind to yourself afterward – Even if the scan is clear, your body has gone through a high level of stress. Rest, relax and even celebrate the small win. And if the results are not what you hoped for, take things one step at a time and remember that you do not have to process everything in a single day.
Scanxiety is something no parent should ever have to experience, yet so many do. If you are walking this path, please know that there is nothing weak about your fear. It comes from a place of deep love. And that love is the reason you keep going through every cycle of worry, waiting and hope.
Neha Bhatnagar