Sorry about the delay in feedback about Charlotte’s progress but Rod and I are taking a bit longer to get over being in hospital and still getting our heads around Charlie’s condition. She is still doing well after surgery despite a tough run of fasting for yet another MRI under anaesthetic. She has lost a lot of weight and we are trying to feed her up and keep her rested. She has been struggling with a chest infection which she needs to totally get through before we move onto the next phase of treatment. We have a team meeting on Thursday afternoon to discuss the pathology of the tumour and a possible course of action.

We have been trying the read and determine the best path for Charlie’s treatment and preparing for what the team might suggest after considering Charlotte’s tumour histology and prior treatment. There isn’t a lot of room to move and we need to get this right for her; otherwise the options are slim. I have been reading medical journal after medical journal trying to make sense of the types of treatment (mainly radiotherapy) and what is best for a positive prognosis. The path forward is heartbreaking and it is one of those times in life where having something rare and special is not a constructive thing!!

I have generalised some of my reading  - radiotherapy and radiosurgery for the treatment of paediatric supratentorial anaplastic ependymoma*

* Supratentorial anaplastic ependymoma (III) are relatively uncommon.

*  Ependymoma is a surgical disease.

*  Very little literature, randomised studies or clinical trials exist to suggest any real advances being made for the treatment of these tumours or any new strategies being used. Simply, intensive chemotherapy, hyperfractionated radiotherapy (Bouffet et al. 1998. p. 319) and radiosurgery (gamma knife or cyber knife) seem to be the modalities at present.

*  In spite of this, technical advances have improved the operability of this tumour in recent decades (Bouffet et al., 1998, p.322).

*  Radiotherapy is still considered the standard adjuvant treatment in intracranial ependymomas (p.323)

* However, there is little evidence to measure the benefit and response of this modality of treatment.

*  Roger (2004) suggests that there is no evidence to support the use of external field or craniospinal radiotherapy (p.459).

*  He goes further to highlight in his review of radiotherapy that there is a worse outcome for anaplastic ependymoma (p.459).

*  Gamma Knife or frame-based radiosurgery does not seem appropriate for young children due to their thin skulls (Giller et al., 2005, p.308). Cyber knife (possibly not available in Aust.) seems more attractive because less anaesthesia is required, no external frame for the skull is used and due to the precision; often single-shot radiosurgery could be possible (Giller, p.308). Additionally, hyperfractionated regimens over a few days are also possible, adding safety to the treatment of paediatric tumours that may be large or eloquently placed (p.308).

*  In their research paper on new therapeutic approaches to ependymoma treatment, Merchant & Fouladi (2005) suggest that radiosurgery (high-dose single fraction radiation therapy) to small intracranial targets has been used with limited success (p.293). But there is still a renewed interest in radiation therapy as a means to disease control. (p. 287).

*  So, it will be interesting to have the histology back and team meeting on Thursday to make the best decision possible for Charlotte!

Thanks again to our beautiful family and friends, thank you for the messages of support and thank you for the prayers and well-wishes. It is certainly harder this time around and we are faced with the heartbreak of putting Charlotte through all this again. It really is too much for any four year-old to have to confront. But as always she makes us laugh and has a gorgeous and fresh way of dealing with everything. She aptly let us know that her head was sore but not hurting following surgery and when we arrived home she skipped up the hallway proclaiming that her head squeaks when she walks!!!!! We were not sure whether to laugh or cringe!!!!!! Finally, when she actually got to look in the mirror she said; “what have they done with my hair?”, then she brushed her hair over the scar and stitches and said “look you can’t see it now!” – truly gorgeous

She makes me think about William Blake’s Auguries of Innocence

To see the world in a grain of sand,

And hold heaven in a wild flower,

Hold infinity in the palm of your hand,

And eternity in an hour..”

Love,
Beck and Rod xo