The past eight days have been horrendous! Charlotte’s bloods hit rock bottom, Rod and I are really over sleepless nights in hospital and Charlotte’s pending MRI has been building subconscious tensions. While we have really felt the exhaustion of this last stay we were given the wonderful news yesterday afternoon that Charlotte still has NO tumour! Not only is there no tumour growth but her cavity is filling up slowly, the ventricles were smaller and there was noticeably less CSF (cerebral spinal fluid) due to the shunt. So, that was brilliant news. We now have the excitement of her last round of chemo approaching and the added bonus of three months off intense therapy until she is reviewed again in three months. Frankly, if there was recurring tumour I am not certain that Charlotte’s body could have tolerated another major surgery and/or radiation therapy.

I packed up yesterday and took a tired and irritable Charlotte home. She has finally cracked it in hospital after nearly 16 months. We have been lucky with her behaviour and reaction to treatments. She is tired and looks it too. The MRI (general anaesthetic) really took it out of her. I am glad that there is only one more round of chemo because it looks like that is all she would tolerate anyway. Charlotte fell asleep just after I opened a packet of popcorn for the journey home. She clenched the popcorn all the way home and I cried tears of relief and joy from Randwick to Daisy Avenue. When I returned home Rod was so exhausted from hospital and work that he couldn’t be happy, sad or anything in between!

It was a sad week also. There were a number of patients readmitted with relapses. I had the chance to catch-up with two mums who have had time at home and spoke about how long it has taken to feel relief, a new life and the ability to take a breath and enjoy a regular routine at home. I know that Rod and I are really going to have to reacquaint ourselves with life at home, each other and a regular routine. There is certainly a level of excitement and trepidation too. Life will never really be the same for us, there are so many things that we have gained from Charlotte’s situation but also a level of uncertainty and sadness for her, and others, that will never ever leave us.

Charlotte’s last round was scheduled for next Wednesday, however, beds are tight so it is now on Thursday. Thankfully, as Madeleine graduates from preschool on Wednesday so now we can all be there together. An exciting week for the girls!

Much love,

Beck and Rod xo

P.S. Pete, last night was a Pimm’s night!