The lead-up to winter was somewhat eventful as we all suffered from a stomach bug and Charlie another virus. BUT this virus was too pervasive for her little body. She woke a few weeks ago, tired, weak and with a hideous headache. I knew something wasn’t too good when I had to get her from her room. It wasn’t the usual 5 or 6am wake-up call of “Beck, what are we doing today?” OR “you can get up, I am up!” She had a temperature and according to Doctor Charlotte was officially unfit for school!!! I had made her an appointment at the GP and headed off to take Madeleine to school and have a coffee on the way home; before our doctors’ appointment. Before I could get home she had a seizure and the ambulance was waiting when I rushed down the hill at Daisy Avenue. Rod had administered midazolam but she was still seizing and the paramedics couldn’t stabilise her either. So, the ambulance headed straight for emergency at St George, as the SCH was too far away. It took an emergency paediatric team and another 40 mins in emergency to stabilise her but she was still unresponsive.

Rod and I were taken aback by how large she looked on the bed! It is nearly five years since she was diagnosed and our very little baby girl is now a big 6 ½ year-old. I felt a little sad that she is still going through this heart-breaking medical journey. She went through a gamut of tests and was covered in the usual tubes, drips, etc. Her poor body was truly exhausted; it was a long and full tonic clonic seizure. After a few days in hospital Charlie was still having temperatures up to 42 degrees! She was so sick that she stayed in her hospital bed and hadn’t walked anywhere, except to the bathroom. She was wonky on her feet by the time she got up to go home. Happy to return home, she was still not well enough to return to school but after a few days at home was missing her new routine at St Declan’s. It was a sad week for Rod and I as we really noticed the sadness articulated by Madeleine as she was separated from her baby sister and the sheer fright Charlotte felt when she awoke in hospital all hooked-up to machines, yet again!

Her team was concerned about tumour re-growth and moved forward her MRI and she is back on anti-epileptic meds! Three steps forward and five back!!! We have a few more appointments in hospital and will reassess meds at the end of June when we visit Charlie’s neurologist. Ultimately, the best news was that her MRI was clear! Her ventricles were the same, so her shunt is working and there was no tumour re-growth. Wooohoo!!!

It is amazing how good she feels this week only a few weeks out from being in hospital. She has been reading the Mary has a Brain Tumour picture book that we had read to Madeleine when Charlotte was first diagnosed. You have got to love the reading material in our library. She is well-versed in the terminology of the brain, medical obs and cancerous tumours….pity about the old kindergarten sight words!

Anyway, she is ending the term having survived and thrived through 100 days of kindergarten, remembers some of her high-frequency sight words, received a Bronze Award at assembly, has managed to get through swimming lessons a source of severe anxiety and exhaustion, she is loving ballet, tap and jazz and has worn me out completely! We are thrilled for her – a regular little girl!!!

Love,

Beck and Rod xo