Just keep swimming

I named my online journal TurbulentFlow as an acknowledgement that the flow of life is rarely smooth and laminar. Right now, the river of life could be headed straight toward a waterfall while I do my very best to continue paddling calmly along.

The hidden undertow is a brain issue with my six-year-old daughter P. Since late November, she has had multiple vertigo type episodes that seemed to come in ever growing waves over the course of a week, crest, and then fade away. We went to Sickkids emergency during the first one. They tried some kind of physical vestibular maneuver, but the conclusion was that she didn’t respond in the expected manner and unlikely she was experiencing typical vertigo. The episode resolved on its own while we were at the hospital, so we went home and resumed life as normal.

Early this month it started again. She immediately saw the pediatrician cascading into referrals to a series of specialists to investigate what is going on. We didn’t expect to get in for an MRI very quickly, but were able to jump on a cancellation spot within a week. 2 days later we had a report identifying 4 potential cavernomas in her brain. Cavernoma (otherwise known as cerebral cavernous malformations (CCM), cavernous haemangioma or cavernous angioma) are tangles of blood vessels similar to raspberry birthmarks on the skin. The clusters form low pressure blood pockets similar in size and shape to a raspberry or piece of popcorn. Unfortunately, what is totally benign and harmless at skin level has the potential to be much more terrifying when inside of a brain.

We’re continuing with the other medical appointments as well, but right now, the cavernomas seem to be a pretty likely explanation of P’s symptoms. I try not to google medical stuff too much. Cavernoma Alliance UK website has been the most useful so far.  The MRI report recommended a neurosurgical review, which we are waiting to get an appointment for now. At minimum, the identification of cavernomas should mean another MRI to obtain a clear picture (the first one was unsurprisingly motion degraded), and regular MRIs after that to keep an eye on them for changes. Unfortunately, the only formal treatment available for cavernomas is brain surgery, which is terrifying for obvious reasons… actually, the whole concept of anything other than brains in her brain is terrifying for obvious reasons. The upside is that we live near Sickkids, one of the best children’s hospitals in the world. No matter what happens, she will be in excellent hands.

And so here we are now. For P’s sake, my husband and I won’t give in to the fear. Everyone who knows and loves this little girl is worried, but she will take her cues from the adults around her. Keep calm and carry on – it’s the only thing we can do.

 

 

About Renee

Fortysomething mom, wife and mechanical engineer. Currently working out plans to found a retirement home circus troupe.
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