“THE MASK… we had radiation planning today (28/6/2016), Dylan has a custom made ‘bed’ and a super freaky mask that will help hold him in position during his radiation treatments. Seriously I am honored to be traveling this life with this kid, not a single complaint or moan, he’s just doing what needs to be done to get well, the kids got tenacity and totally rocking this journey!!! ”
Radiation – I’ve been skirting around this topic for a couple of weeks now. I wasn’t quite sure how to put the experience into words. It was worse than we imagined. It made the diagnoses real. The long term side effects are frightening….. Maybe these are the reason I found it difficult to write about it.
Chemotherapy seems to be quite mainstream…. Everyone seems to have an idea of how tough chemo can be, whereas radiation seems a little bit more subtle, it’s not spoken about quite as much, and well it’s really pretty harsh, especially when it’s your brain being radiated ….
Radiation planning included a ct scan where a special ‘bed’ was molded for Dylan as well as a special face mask, this is fitted so that it can be secured at each treatment so that he couldn’t move (his head was essentially tied down to the radiation table for the duration of the treatment each day, sometimes there were impression marks left on his face after a treatment), they also marked a few areas on his body, using a permanent marker and then putting clear waterproof type tape over it, this needed to be pulled off, new marks made over the original ones and new tape reapplied every couple of days. (Sometimes his skin came off when the tape was pulled off).
The initial side effects of radiation are not necessarily terrible, some vomiting, perhaps burns, fatigue, hair loss…… It’s the long term side effects or late effects that are really hard to swallow. The effects on the brain decreased cognition (IQ, learning, memory, attention, behavior), hormone deficiencies and abnormalities in growth and development, growth and development of bone and soft tissues, permanent hair loss, dental complications, hearing loss, a risk of breakdown of normal tissue (necrosis), and of course the risk of another tumour forming in the path of the radiation beams (we were told that thyroid cancer and abdominal cancers are possible late effects), the whole area, all the way through is affected (Dylan’s treatment, whole brain and spine radiation), it’s like radiation is the thing that slowly just keeps going.
It was about a year ago (14/7/2016) when Dylan begun his first of thirty radiation treatments. It was exhausting both emotionally, mentally and physically, every weekday for six weeks we drove into the city, waited patiently, he had his treatment, often lasting about an hour and then drove back home. We got an approximate schedule each week but the times of the appointments were confirmed the day before. He had other medical appointments in between and had regular finger pricks to check his blood.
He lost a kilogram in the first few days of radiation, vomiting was a normal occurrence and about two weeks later his hair began to fall out. He called me into the bathroom, showing me a handful of hair, and as he continued to pull handfuls out, letting them fall to the ground the reality of the harshness of this silent killer engulf me. We cut his hair short that night, and then shaved his head the next day, little bits of his hair was left all over the place.
He was in the shower when he mentioned that his skin was peeling off, he was rubbing off the skin on his chest, the skin around his ears was also dead and peeling, these are some of the visible side effects of radiation.
Sometimes he could smell the burning and other times he could taste it. We accepted it, with all its risks and side effects. We know that the late effects from brain and spine radiation can be quite severe, these are yet to reveal themselves to us, so we continue with things as they are and accept that things may change.