To mark Brain Cancer Awareness Week Rod and I attended the NSW Oncology Group Neuro- oncology Brain Tumour Forum. Sadly, I was excited about attending (oh, how life changes!). The keynote speaker, Dr Tim Cloughesy Director UCLA Neuro-oncology Program, spoke predominantly about malignant gliomas but specifically about the emerging molecular biology of tumours. Whilst it was pretty heavy going (I absorbed about 10% of the information) it looked at investigating particular tumours for specific genetic make-up (not genetic hereditary but abnormalities of tumour cells) So while an histology for most tumours can be ascertained within these classifications (histology) are sub-groups through which more specific treatment (protocols) could be developed. Understanding the gene expression (DNA, RNA, amino acid, protein make-up) allows people to understand how the abnormal cell functions. Hence, this research has recognized that tumours are heterogenous. They are complex medically, even for the medical. With improved molecular biological understanding treatments could certainly be improved  tailored. Sadly, this level of understanding and molecular detail is not the same for paediatric brain tumours. Dr Cloughesy and many others who spoke during the day emphasized the importance of tissue banking as a standard of care if we are to see any real developments in this area. Rod and I are hoping that by having Charlies tumour tissue banked and participating in the AUS CBT national case study we will contribute in a very small way to the understanding of this hideous condition. Sadly, the cognitive late effects for brain tumour patients is still unacceptable. I am not sure if too much information is such a good thing. However, there is so much to be learned.

 

On Thursday Charlie went back for chemo (Round 15). She had three weeks off chemo in an attempt to get her bloods (mainly platelets) right for surgery. Needless to say when you havent had cytotoxic drugs for three weeks and the hydrocephalus has been removed from your brain you feel pretty damn good. In fact Charlotte was the best she has been in almost two years. I nearly wanted to ring David (oncologist) and tell him she was great and we were not coming back! BUT we didnt! We arrived for bloods and the ward was full so we waited until nearly 1pm for a bed. She was accessed and chemo began swiftly. Charlotte faired well over night and we were hoping to go home the following day. However by 9am that morning she spiked a fever and a gamut of tests were done. By the afternoon she was going down hill rapidly and we knew it would be at least another 48 hours before she would be well enough to leave. Unfortunately, at 3pm Charlotte lost consciousness whilst on my lap, vomited and had a mild seizure. Luckily the emergency team acted quickly and Charlotte began breathing on her own shortly after. Charlotte spent the next 24 hours being hooked up to many machines and enduring hourly obs throughout the night. She and I were both exhausted! But to our delight she was fantastic the following day. Her fever subsided by 3am that morning and by 9am she wanted to cruise the ward once again. Amazing! The next 24 hours was spent discussing the circumstances and nature of her seizure with a numerous specialists.

 

After three days in hospital, whilst Rod was at work, I went home on Saturday night for some much needed sleep. Charlotte and Rod returned on Sunday at lunch time. A complete Mothers Day! I hope everyone had a lovely Sunday with mums, family and friends.

 

Much love,

 

Beck and Rod xo