Charlotte had a good night and an energy-packed morning. From 6am she

wanted out of the cot. So we went walking. We played in the toy room

and walked the corridors to satisfy Charlotte’s desire to walk and

investigate the goings-on of life outside of her cot. She had a good

physio session and clocked-up 64 consecutive steps. I am not sure who

was happier: Charlotte, the physio or me?!

 

We kept ourselves busy trying not to think about our meeting with the

Neurosurgeon, Radiation-Oncologist, Oncologist and social worker to

discuss Charlie’s diagnosis and prognosis. We are sorry to write that

our meeting today was heartbreaking but we were as prepared as we

could be for the results from the histology.

So, here is the simplest explanation of what took an hour to explain to Rod and I, by the experts:

  • Charlotte has Anaplastic Ependymoma, which is a fairly rare malignant tumour.
  • An aggressive type classified by the WHO (World Health Organisation) as a Grade III (aggressive end of spectrum).
  • AEs make up 8 to 10 percent of childhood tumours. They arise in
  • cells that line the ventricles.
  • AEs need to be fully removed by surgery and if resection is not complete, a third surgery may be necessary for Charlotte.
  • To cure Charlotte this type of tumour needs to be treated with
  • radiation therapy.
  • It is not a tumour that responds well with chemotherapy.
  • However, radiation treatment is not usually given to children with brain tumours who are under the age of 2.
  • Similarly, due to the large size of Charlotte’s tumour, radiation can not be localised and would cause tremendous damage to her forever.
  • Whilst surgery is not enough, chemotherapy, in some American studies, only has a 30% success rate.
  • This second phase of treatment (chemo) may take a year.
  • To make matters even worse, because the tumour is so aggressive and due to the nature of AEs it may have spread to her spinal fluid.
  • So, they hope to do another MRI (another general anaesthetic) to assess both the residual tumour and check her spine too.
  • If the tumour has encroached her spine her prognosis is questionable.

This was a devastating discussion that hinged around treating

Charlotte without causing damage to her brain. On a more positive

note, Erica (neurosurgeon) said she thinks that she can operate

through the same route as before, the tumour is mainly inside the

ventricles, and areas that looked damaged look to be all right in the

follow-up MRI.

Once the tumour is all gone and it does not relapse it takes 7 years

for a patient to be "cured" of an ependymoma.

Love,

Beck and Rod xo

"When the world says ‘give up’, hope whispers ‘try again’." Anon.