After being discharged on Friday we were all home together, which was such a treat. I was so excited to be home over the weekend before chemo again on Monday. I was looking forward to taking Charlotte for a walk in the pram and enjoy the warmer weather, Rod was hoping to get a paddle in and Madeleine was off to the circus with her cousins. However, we were all exhausted and nobody surfaced from their bedrooms until just after 7.30 on Saturday morning. I woke with a fright to little feet walking into the corridor and calling out to me. Charlotte had got herself out of bed and was waiting in the hall for us to get her. I jumped out of bed and Madeleine, also awake, was laughing at Charlie standing there in her sleeping bag with her beloved blankey. She declared her need for breakfast and we went out the back to eat and start the day. She showed me her blankey which was wet and I put it straight in the washing machine to be washed, I was confused as to how it got that way as I started making breakfast. When I looked at Charlotte sitting on the breakfast bar next to me as I made breakfast I noticed her bandage and head area were wet also. I picked her up and ran to her bedroom where there was a pool of fluid on her sheets, pillow, etc. She was leaking cerebrospinal fluid from her brain and it wasnt clear.


I quickly woke Rod and rang emergency and her neurosurgical team. She was rushed to hospital by 8am where she is being treated. She is attached to a drip and an EVD (external ventricular drain). The EVD is attached to her brain by a needle and the fluid is draining into a bag at a specified rate and amount. She can not move and her position is levelled by a laser. Every time we want to put her to bed, change her nappy, etc we need to call the nurse to level the EVD. So, she requires two people to be with her most of the time. Unfortunately, the site of her surgery is now deemed compromised. If fluid can get out infection can get in. She has a low grade temperature and is on antibiotics to help ward off infection. The surgeons need to drain the excess fluid, allow the site to heal and she will need to have the shunt implanted. We are devastated. The risk of large infection is really dangerous and Charlotte has a long and tedious recovery ahead. Not to mention she can not have chemo which is already a week late!


We are in C1 North (neurology ward) where we were when we were first diagnosed and Rod and I feel very uncomfortable down there for many reasons. She has hourly obs throughout the night so there is little to no sleep and Rod is at breaking point after months of juggling shift work and Charlottes frequent stays in hospital. I have never seen him so tired. The emotional strain, sleep deprivation and constant roller coaster of events with Charlotte are taking there toll. The only thing keeping us smiling is Charlottes amazing nature and frivolity. She is quite hysterical. The nurse was running through the usual admission questions; no allergies, is she cytotoxic, does she have a port or central line? To which Charlotte replies; ports accessed! We have been in hospital way too much; she has her own little medical vernacular developing.


I am not sure what else to say. The situation is quite complicated and there are so many small and important details for her team to consider, all of which are dependant on Charlottes recovery and how she responds to this situation. This is not a good place for Charlotte, her body is working very hard and the assaults just keep coming.


Much love,


Beck and Rod xo