Holding my breath

I know this sounds like a weird title for a post, but I’ve been feeling this way lately – holding my breath, not daring to get too excited. You see, last time we scanned and urine tested in September, we had some very positive, encouraging results. The urine test measures the levels of catecholamine’s in Carys’s wee. The tumour secretes this hormone, so the test is used primarily as an indicator of the presence of neuroblastoma. The first time Carys was tested for this back in HK, her levels were “grossly elevated.” I can’t remember the exact number of the level, but this was the test result that made us decide to come back to Melbourne. Up until then, all her tests had been imaging, so it was the presence of this hormone in such high levels that made the beast inside Carys so very real for me. Since the surgery, the levels had been “higher than normal.” Then in September, the levels fell within normal levels! Could this mean the tumour was regressing? Quite possibly, said Lisa our oncologist. The tumour is still the same size in the scans, hence the reason for our cautious optimism. If we continue to see lower catecholamine levels, hopefully, the tumour itself will start shrinking. Our next scan and urine test is scheduled for Dec 23^rd, and I keep reminding myself to breathe……..

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.

A Double Life

As life moves on and becomes filled with ever more kids activities, I sometimes feel as though we are living a double life. We have met lots of new friends through Tane’s school and Carys’s music class. However Carys’s cancer is not a topic of conversation that is easy to bring up. Her hair has grown back all soft and curly, so she doesn’t look like a cancer patient anymore. In a way, it is refreshing to be just like everyone else, dealing with normal, everyday things like settling into school, runny noses, fussy eating habits, etc. Although Carys’s cancer is not a secret, sometimes I just don’t feel like facing the reaction most people have when I tell them. Shock and disbelief is usually the first reaction. Then come pity, sadness and sometimes tears. I know that raising awareness of neuroblastoma is important, but I just can’t fly the flag all the time. So on the one hand, we go to music class, where Carys runs around with all the other toddlers, singing and dancing with Darminder, and no one knows she has cancer. Then on the other hand, we go to Challenge’s playgroup for kids with cancer. The kids in this group are very special. Some have lost their hair, and some have nasal-gastric tubes. They all have their own individual journeys to travel. But at heart, they also love to sing and dance and play, just like any other kid. Challenge does such and amazing job. They aim to improve the quality of life for kids living with cancer by organizing fun activities in a safe, warm, relaxed environment. We are so thankful for the support they give and the opportunities they provide for Carys (and us!) to have a laugh.
It is scan time again, and Carys had her MRI last Monday. We will see Lisa on Thursday for the results of this and the urine test.

Another MRI

It’s MRI time again, with Carys’s 4th post-op scan done a couple of weeks ago. We saw Lisa for the results this week, and it seems pretty much the same news as last time. The tumour is a little bit bigger than the previous scans 3 months ago, but nothing significant. So we went back 6 months to compare against her September scans, and the tumour is about 1cm longer since then. Not the news we were hoping for. Each time we scan, we are very hopeful for some shrinkage, but at the same time, try not to get our hopes up too much. Lisa was reassuring as usual, again emphasizing the factors we have in our favour, ie, that the tumour is not N-MYC amplified, has favourable histology and has no metastases. However, I could sense that her concern levels were raised. She wants to continue to keep a very close eye on Carys. Should the next scans in June show the same pattern, then surgery becomes a very real possibility. I am still trying to sort through my thoughts on this. The best possible path would be for spontaneous regression, and that’s what we continue to hope and pray for. I am loathe to put Carys through another major surgery, but if a second chance meant the tumour could be completely removed, then it would be worth it. If it comes to that, I know Carys will be my source of strength. She’s such a brave, strong, resilient little girl who takes everything in her stride and emerges even stronger than before. It’s me who falls apart to see her hooked up to numerous tubes and all bandaged up.
In other Carys news, we have seen her language and communication just explode in the past couple of months. Yesterday, she found some old baby photos of Chris and me. She came to get me, pulling on my hand saying “mummy, mummy, come quick, check this out!” She understands everything that’s going on, and we can have proper conversations with her. Every day is just a joy to spend with her, watching her blossom and thrive.
Meanwhile, big brother Tane has passed a milestone of his own. In February Tane started school and after a bit of a rough start, he seems to have found his place. He comes home with stories of sand castles and singing Aladdin songs. Oh and he’s also learning to read and do maths, so its not all play!

One year ago today

One year ago today, January 29th 2010, I first heard the word neuroblastoma. I've mentioned before that this past year has felt like the longest year of my life. But one thing that seems like it has just happened is diagnosis. The memories of that routine first year check up and the weeks that followed are still so vivid - along with all the associated emotions. Something fundamental and deep inside shifted that day, changing me forever. There are some days when I wish this was all just a bad dream, and then there are days when I have found strength I never knew I had. One of the helpful lessons I learned at the parenting course is that of acceptance. Accepting everything both good and bad that has happened, because that is my life story. Often I have tried to bury the painful memories and emotions, but to do that is to lose part of myself. Besides, it can never really be buried, because it did happen. And often, those nasty emotions have a habit of coming back stronger than ever if I try to push them down. So each day I look at Carys's beautiful face and it brings fresh hope that all will be good.

Carys turns two!!

Carys reached a special milestone on January 20th – she turned two! We had a low-key celebration with family at home. She had her heart set on a dinosaur cake (or in Carys speak – “daidoors” cake). We all had a lovely afternoon. Carys loved her cake and got lots of fun presents.



For me it was a mixed bag of emotions. Really happy that she’s doing so well, but at the same time, feeling drained and exhausted. I mentioned to Ian that I couldn’t believe Carys was turning 2. In some ways it felt like she should be turning 4, considering everything she (and us) has been through this past year. Her 1st birthday in HK seems like a lifetime ago. 2010 has definitely felt like the longest year of my life, but through it all, I think we have gained so much. We’ve found what really matters to us. Love, hope, family, living in the moment and taking the time to appreciate and cherish our children. They are both such funny, smart and caring people. I feel blessed to be their mother.
Carys has been going through a bit of a growth spurt these past few months. I think she is playing catch up. For much of last year her weight and height plateaued, but now, it seems she is growing noticeably from week to week. Her hair is also growing back, lovely and soft. It is also starting to curl at the back. So cute!