Charlotte and I spent most of the day at Sydney Children’s today, not having active treatment but visiting a friend that is back having treatment for a relapse. I felt sad to be in hospital visiting such a beautiful family but elated that I was sitting there with Charlie and she was happy and looking great; two years since that dreadful diagnosis. We still have a long way to go and while we were in hospital today the medical sleep team at Sydney Children’s spoke with us about trialling some treatment to assist (hopefully) with Charlotte’s chronic sleeplessness.  When I wrote the last post Charlotte had slept 8 nights in a row, which was the first run of full sleep we have experienced with Charlotte in years! We are, on average lucky to have one full night’s sleep a week. Constant stays in hospital, hourly/two hourly observations when we were in hospital, anxiety from not being in the room with her and medication that can make her sleepless has made Charlotte a light, disruptive and anxious sleeper. Rod and I have reached an all-time low as the sleep deprivation has finally worn us both down. Not to mention, Charlotte is not getting the restful and lengthy sleeps a young, now growing, child should experience.

So, we will embark on a medical journey with the help of the Sleep team at Sydney Children’s!!! Our fingers, legs and arms are crossed!!!!

I was thinking about the Charlotte that we brought home from hospital in January and I have forgotten just how hard things were and how much she has progressed since regular treatment has ceased. She wasn’t able to eat her meals unassisted, she needed help walking down stairs and walking to the car each morning when I would drop Madeleine at school, she was still quite pale, would scream if you left the room to do anything and was not yet toilet trained. She can now do all of these things, is flourishing at preschool and is thrilled with her independence and her concentration has even improved. She has a fabulous vocabulary which she feels the need to use continuously. From the moment she wakes (which could be midnight, 2am, 4am) she engages in continued conversation and relentless questioning. A typical 3 ½ year old! Yeah!  We still have things to work on and continue to have Oncology clinics, neurology check-ups and neurosurgical consults. So far, so good. But we know that the seven years until she is clinically clear of the ependymoma will be a long wait. We will be extremely lucky to get to that milestone.

Congratulations Charlotte for being a brilliantly resilient and energetic child. Thank you to everyone who still checks the blog at times and the continued support of our family and friends. We are grateful for the place that we find ourselves in today.

Love,

Beck and Rod xo