Well, after a dreadful start to the New Year my mother-in-law reminded me that the Chinese New Year did not start until February in an attempt to try and restore my faith in the healing powers of a new and better year ahead! After having the seizure we returned home and allowed Charlotte to settle at home on new medication and another attempt to stay out of hospital. The combination of a new bed, sleeping away from Rod and I, new medication that makes her a little sleepless and the emerging understanding of the dark and noises in the night meant Rod and I have had mainly sleepless nights since.......

 

Charlie has remained out of hospital for nearly eight weeks now....a record for Charlotte!!!! We have had neurology clinic, oncology clinic, bloods and a short stay to have the operation to have her port-a-cath (device used to administer chemo and intraveneous antibiotics/meds) removed but she has otherwise been well. She had a psychometric test of sorts last week and is at Randwick for some check-up or consult each week. Charlie is proud to be out and about, she is growing hair and constantly asks if she can put a clip in it yet!!! She has grown a little since chemo stopped and loves her food.

 

We are working with the specialists to get Charlie to pre-school sometime around her third birthday in April. The pre-school is really excited to have her. I have warned them that she is hard work, strong-willed and may possibly be the first three-year-old to be expelled.... they think I am joking!

 

I am settling into life at home with Madeleine and her school routine, Charlotte and her weekly clinic visits and Uni. too. Rod and I have had three full nights sleep this week and Charlotte is making progress each day. She becomes more settled, steadier on her feet and a little less clingy. We are really proud of how well she is doing.... very bright, energetic and hysterically gorgeous.

 

Rod is enjoying a calmer life with work, a few more social events and some exercise. Life is busy but so much easier without regular hospital stays. Every time I feel exhausted by Charlotte's constant requirements I reflect on how easy life is when you are not walking with your child as she struggles her way through treatment.

 

We are thrilled to be where we are and always grateful for the place that Charlotte finds her self in. Some of her friends in C2 West have had some tragic journeys in recent weeks. I just love being at home and I am always mindful of the support that we have experienced. Thank you!

 

Regards,

 

Beck and Rod xo