It has been six months since we were told that Charlotte had a brain tumour. In some ways it feels like yesterday and in others it feels like so many moons ago. Rod and I are feeling the exhaustion of being in hospital so regularly but are grateful that we get out at all! Madeleine is getting use to Charlotte’s chemo routine and knows the drill when we have to leave quickly for emergency. She asked what she was doing last Monday and I told her she was having swimming lessons with Daddy and Charlotte was back in hospital. To that she replied; "Oh Charlie, you’ve got chemo" Swimming lessons/chemo, I know which one I would prefer!

So, how is Charlotte doing? REALLY well, all things considered. She eats well (at home), plays well and has reached The Mighty Toddler status. She is determined, cheeky, cuddly, inquisitive and has a smile that seems to keep the nurses and doctors at SCH engaged. She is missing her special Doctor Doreen, otherwise known as bubbles. Doreen was a registrar paediatrician on C1 North when Charlotte was first diagnosed and then moved to oncology during Charlottes past four months of treatment. Doreen has just moved to her next specialty and Charlotte is missing her frivolity, bubbles and medical care. We are too! I know that there is a fine line between personal care and medical professionalism but we have really appreciated Doreen’s warmth and time. I think she has been advised to move on and be more detached. But we do hope that she doesn’t lose her warmth and generosity of spirit. I think they are the qualities that are necessary, imperative in paediatrics. She has brightened our day on sooooo many occasions.

 

 

Charlotte’s favourite word is WHY? If you don’t respond with a suitable explanation she just keeps at you. You know when she is happy with your response because she ends with a sigh and says "yeah!" Those of you who know me well know that I don’t mind dropping the odd expletive. Well, I am pretty good around the kids, as you should be, but Charlotte really likes to mimic and whilst Madeleine has never repeated a mistaken swear word from my mouth I have realised that Charlotte is not going to be so forgiving.

We have just returned home from chemo. Charlotte was only sick once during her first night but needed a blood transfusion last night before we were discharged. She had her neurology check-up whilst in and Annie is still amased by her tenacity and growth. I think her words were; "you brighten my day Charlotte" We have a hearing test under sedation next Friday and Chemo on Monday 22. Here’s hoping that she can stay out until then?!#@!?

Rod and I have learnt a lot over the past six months. Most things we already knew but have been reinforced…consolidated. Life has slowed down, a fraction, anyway! There are not too many dinner parties, morning teas, nights out, etc. Rod isn’t exercising as much, which is VERY hard for him! I am not exercising but that has been a four year drought! So when Rod is feeling bad about missing regattas and training I remind him of the length of my inaction. We have learnt lot about ourselves strengths and weaknesses. We have enjoyed the immense generosity of our friends and our places of work. Despite missing work (mainly the friends) I am enjoying being at home with Madeleine before she starts school next year and then I won’t see her except to taxi her to and from after school events. I am glad to be Charlotte’s event secretary, organising appointments, packing bags, dealing with medical information, studies and procedures. Rod and I have learnt a lot about neurology, oncology, the fusion of medications and toxticity, etc, etc. We are certainly learning to cope and deal with the rollercoaster hospital system. All in all, it has been a tremendous six months. It has been a strange and comforting mix of heart brake and heart warming joy - a dichotomy so hard to explain.

Charlotte is up to day 128 of her protocol. She has 18 rounds of chemo to go! Officially the year ends around the end of September but with the infections and port problems we will be lucky to finish by Christmas. My hope that is Charlotte endures NO recurrences and she is well enough to pull through a grueling year and finish the entire protocol. An enormous wish, the biggest wish I have ever had. But I am hopeful. She is an extraordinary little girl and Rod and I are blessed to have her.

Much love to you all. Thank you for your tremendous support and generosity.

Beck and Rod xo