This is now

Whenever I open up Carys's blog I see her as she was in the midst of treatment. I love the photo of her holding Tane's hand at our favourite park. It was such a lovely day, getting out in the sun and fresh air. And I love her little bald head. It was perfectly round and soft. But she has grown up so much since then, with beautiful curls......

At the local market, they have face-painting on Saturday's. Carys asked for a butterfly balloon, then when she saw the other kids having their faces painted, she asked for a pink butterfly, with sparkles (of course!)

On a recent holiday down at Sorrento, the kids loved going down to the beach every day. This was at Koonya back beach.

Near Sorrento, there is an amazing garden called the Enchanted Maze. Here's Carys driving the vintage tractor at the Enchanted Maze.

The fairy garden at the Enchanted Maze was bliss for Carys. She ran around giving all the fairys a kiss!

Everything stable

It’s been a while since our check ups with our oncologist Lisa and surgeon Michael, and now I’m long overdue for a blog update! In all our previous check ups with Lisa, further surgery was always an option should the tumour progress It was quite reassuring to know that we had this option. Even though I hated the thought of putting Carys through another major surgery, it made me feel a little less helpless in that some action could be taken if need be. However, in this past cycle of scans and results, we also met with Michael, whom we hadn’t seen since Carys’s first operation. After reviewing all her scans over the past year, Michael believes that another surgery at this stage would be too risky. The tumour is so close to the nerves running along Carys’s spine, that a total resection would inevitably result in nerve damage. Since the tumour is not affecting Carys’s health in any adverse way, it would not be in her best interests to operate. I felt great respect for Michael when he said, “sometimes the hardest thing to do, is to do nothing at all.” It echoed my sentiment exactly as a parent having to just sit tight and wait. And from Chris’s perspective as a fellow surgeon, he felt that a good surgeon is one who knows when to not operate.

Although it is a relief that we don’t have to go through another surgery, we have to find the strength to keep going with this beast inside her. At the parenting course I did on coping, a mantra we were taught went “hello fear, my old friend.” At the time I learnt this, as part of a meditation exercise, it was too scary to even repeat this in my head. But now, this is just how I feel. We have come so far, with the fear constantly with us like an old friend. Not one that I want or like, but one that I need to accept.