I woke this morning to Charlotte’s little voice calling; “Mum, look!” and as I looked down at her she had rolled up her top and was showing me her, supposedly sterile, bandage peeled away from her central line. I gasped and jumped out of bed to search for a sterile, sticky bandage to reseal the wound until we arrived at hospital. The drive in went well – little traffic and only one meltdown from Charlotte about her starving state! Once we arrived the nurse on C2 North was excellent with Charlotte and agreed to send the dressings down to operation/ recovery for them to do the redressing under anaesthetic to avoid upsetting Charlotte.

We then walked over to Prince of Wales for radiotherapy. We arrived to a warm reception by the staff in the adult hospital. The nurses had made a huge poster with Charlotte’s name on it and all the days marked out for Charlotte to put a sticker on as we complete each round of radiotherapy. It was just gorgeous! I was feeling really good about everything – Charlotte was doing well and everyone had been very helpful. The nurse then said that Charlotte’s radiologist wanted to speak with me before we commenced and I knew something was up! I then had another discussion with Charlotte’s radiologist who advised me that they could not administer radiation solely from the right frontal lobe as hoped. They would have to come from both sides in order to minimise impact to the hypothalamus. Functions of the hypothalamus include the:

  • release of 8 major hormones by the pituitary gland
  • controls body temperature
  • control of food and water intake, hunger and thirst
  • control of sexual behaviour and reproduction
  • control of daily cycles in physiological state and behaviour also known as circadian rhythm
  • mediation of emotional responses

It is quite reasonable to suspect that Charlotte’s hypothalamus has already been damaged in some respect due to the immense pressure that it was under before the tumour was originally removed in 2009. Similarly, it is also understandable why her circadian rhythms were so disturbed and we had so much trouble with her sleep for so long. So, to have further damage would be devastating. However, Charlotte will lose hair across the front of her head and for her this is a big deal. She loves her hair now that it has finally grown back…so beautifully! I felt somewhat ambushed by this late discussion before I signed away yet another massive medical procedure. We finally went in to radiation and Charlotte sat on my lap asking the doctors and nurses a trillion questions about everything in the room that was new or interesting to her. Meanwhile, they had put her to sleep via her central line and she was none the wiser. No mask, no pre-med and no screaming! Woohoo!!!

I grabbed a coffee and buried myself in Barbara Arrowsmith’s, The Woman Who Changed her Brain. I had been fortunate enough to hear her speak on Monday morning after reading about her work back in 2009 when my beautiful friend, Chris, bought me Norman Doidge’s, The Brain that Changes Itself. When I read about her work in Norman Doidge’s stories of neuroplasticity I talked about finding out how her work with neuroplasticity and cognitive training may one day benefit Charlotte. So, yesterday was a profound moment for me. Being an educator and having a child with a brain tumour (and virtually no frontal lobe), it was impossible not to feel truly elated by the possibilities and wanting to cry at the same time! The words and information of one woman's life resonated so intensely.

I often describe to Rod that parenting Charlotte is like hitting my head against a brick wall. While my friends respond with comments like; “that’s a four-year-old for you” and “there all the same”. I know that it is not just her personality or just developmental but much more. Ironically, as I sat and read the chapter “Hitting the Wall”, I finally put together the pieces that I have been looking for. As I have long been suggesting the large removal of a frontal lobe may have no quick-look, psychometric tested answers, or obvious visible deficits. However, the damage to the frontal lobe and removal of most of it is critical to her impulsivity, Charlotte’s ability to disregard her actions, her lack of attention and distractibility and other issues with her working memory. These deficits are what I live with and what she will come to find more and more frustrating as she is expected to function at school and beyond.

After listening to Barbara speak yesterday, reading most of her book and other texts like The Brain School by Eaton; it is a relief that the brain is not considered “hard wired” like a computer but more like a muscle that can be exercised. What makes the Arrowsmith Program truly amazing is not just that it is steeped in neuroscientific research or that it really works for people with learning difficulties but that it was pioneered by a lady who herself suffered from learning disabilities and advocates that her “daily prayer is that this work, grounded in compassion, its integrity uncompromised, goes into the world with ease and grace” (Arrowsmith 2012, p.216).

As I was drawn in by each page and its possibilities for Charlotte I realised that she had been in theatre way too long. When they finally called me they had taken much longer to fit and adjust the mask to make certain that the radiation was given accurately. Once in recovery things just went downhill. Charlotte took a long time to wake and when she did was out of control and was agitated, angry, screaming and hitting me with uncontrollable rage. This continued for nearly an hour and a half before an anaesthetic doctor was called. It was a busy morning in recovery and I was left somewhat on my own to weather this unusual and distressing behavior. The anaesthetic doctor spent some time investigating Charlotte’s anaesthetic doses and talking about the morning with me. She explained Charlotte’s reaction as a clinical condition called emergence delirium. This condition can be experienced by any patient coming out of anaesthetic but is common in children between 4 and 6 ½ years old of age. As you can imagine 6 weeks of this would be enough to wear us both down completely. I was exhausted and Charlotte can’t remember a thing. So, everyone is on alert for how things are going to pan-out tomorrow. Today was an overload for both of us. I am hoping for a smoother run for Charlie tomorrow.

Love,

Beck and Rod xo