It is a little over 9 months (Rod was a little ahead of himself in a previous post. Wishful thinking!) since Charlotte was diagnosed with a tumour. A delayed reaction to her last seizure, a dreadful cold, that time of the month and sleepless nights in hospital culminated in an emotional and physical crash, for me. I am not sure whether the gravity of Charlottes condition has finally got to me or I am just exhausted but last week was my first dreadful week since her diagnosis. Thankfully my dear friends and Mum have been amazing. I keep reminding myself that I am not having chemo and if Charlotte can do this with a smile and maintain such an endearing disposition then what is my problem!

 

She has been looking great, eating well, sleeping well, playing with gusto and making us laugh daily. Her last round was hard with 48 hours on a chemo drip isolated to her bed space and another 24 hours following. The care of the nurses, the play therapist (Kylie), the volunteers on C2 West and the music therapist keep Charlotte entertained at times when she begins to get very frustrated. She just wants to walk around the ward and visit other patients and staff. She has taken a real liking to Patsy the Assistant in Nursing. Patsy cooks Saturday lunches for the families, meals and snacks on Sunday and generally keeps the ward a happy place!

 

Following a lull in my enthusiasm I was talking with one of the nurses about where Charlotte was up to and we realised that she only has 12 rounds of chemo left on the protocol which equates to three cycles. Three cycles sounds so amazing!!!!!!!!!! We returned from hospital on Sunday afternoon and she had a kidney function test with Nuclear Medicine yesterday and a Hearing test with Audiology today. It really is never ending! Previously Charlotte has had the hearing tests done under sedation because it is long, intrusive and she has just been too young and frightened to sit still, quiet and concentrate for an extended period of time. Well, today was amazing. She completed the whole test and has not lost any middle ear or hearing function. Cisplatin, one of the drugs on the protocol, effects hearing. As part of the protocol she must have these tests in order to keep continuing though to the next cycle. I felt a real sense of relief today. Our next round is on Thursday if Charlotte can hold out that long. We are hoping the GCS-F will kick in shortly and help her get through until next week; as her wbc count was low going into her last round.

 

All in all she is amazing, wickedly funny and experimenting with many new words. Unfortunately one of those happened to be the s word after she flipped her porridge bowl on the floor the other morning and I slipped out the expletive. My Mums worst nightmare! Youve got to laugh!!

 

Love to all,

 

Beck and Rod xo