We were there to watch the nurses hang Charlotte’s first bag of chemo and we were there to watch them to the last burrette down on Sunday afternoon. We have never been prouder of anyone, than we are of Charlotte. She has lived a true nightmare – 10 surgeries, tests, bloods, assaults to the body and 28 rounds of chemo. Yet, she still smiles, laughs and tonight just wanted to dance. Following dinner Charlotte and Madeleine jived to Jamiroquai’s  “Travelling without Moving” (which is exactly what this last 16 months has felt like) and I felt a real sense of joy as I stood in the kitchen and watched Charlie run in circles. While this was all going on poor Rod was backing-up with three night shifts on top of a few stays in hospital!

 

Charlotte had a chemo party with many of her past and current nurses visiting, specialists, therapists and doctors dropping in to congratulate her completion. She had a blast with party food, music, her family present and hospital friends. There were even a few presents and we played a slideshow of her past 16 months in hospital.  All in all, in Charlotte’s short life she has been in hospital more than she has been out. So, hospital and its staff have contributed largely to her outlook, development and friendship circle.

 

There is a lot ahead for Charlotte and we know that her journey to become clinically free of the tumour is a long one. It is 7 years until they deem her clinically free. She will need to have an operation to have her port removed in about 6 – 8 weeks, regular bloods, clinics, OT testing, psychometric testing, immunisations re-administered shunt checks and regular scans. If all remains clear she can commence preschool by April (3rd Birthday) but is still considered immune suppressed for 6 months. So, we will need to continue some regular meds and have her temperature taken daily for that period of time.  There is still a real chance of recurrence and that will mean radiation and/or surgery at that point. The last stay at hospital was also quite sad with a number of relapse patients admitted. It is so hard to watch those families walk that difficult road, once again.

 

We will continue to write each 3 -4 weeks until her third birthday in April. We are hoping that we have a clear scan at that point and she can really enjoy being three. We are all looking forward to being home more, with friends and family more often and enjoy being less exhausted and emotionally spent.  When Madeleine said her prayers tonight she asked for no rain on Sunday (her 5th Birthday party) and for Charlotte to stay out of hospital for her party too. I told Rod when he called from work and he noted that she might be heading toward her first disappointment in God – there is rain scheduled for Sunday and Charlotte’s temperature was creeping up tonight! We are hopeful!

 

With all life changing and horrendous experiences come many wonderous and meaningful moments. We have enjoyed the love and support of a huge group of people - at the hospital, in our local community (swimming, our lovely street/neighbours, the local IGA, Coles at Oatley, cafes, SG Hair, preschool, etc), our friends (old and new), acquaintances, Qantas, St Patrick’s College, and our wonderful family. We could not have made it through without the warmth, empathy, generosity of spirit and almsgiving afforded our family. We are, and forever will be, enormously thankful. Pete, we thank you too for continuing to post our updates and maintain the website. It is brilliant!

 

We are relieved but nervous too. We have clinic and bloods tomorrow and hope not to have to stay in. Charlie is tired, nauseated and her little body is working very hard. We know we have a lot ahead with Charlotte but really hope for some peace. As the saying goes; “learn from yesterday, live for today and hope for tomorrow.” So, we will try!

 

Here’s hoping that everyone enjoys a happy, healthy and restful Christmas and New Year.

 

Much love and appreciation,

 

Rod, Beck, Madeleine and Charlotte xoxo