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!

3rd MRI results

We saw Lisa last Tuesday for scan and test results. From the MRI, the tumour was just a fraction bigger than 3 months ago, and the hormone levels in Carys’s urine was also slightly higher than previously. We were not so pleased to hear these results, but Lisa was not concerned. As she explained that a couple of millimetres was not significant, especially as MRI scans by nature don’t always have clear cut outlines. There is one part of the tumour that Lisa is keeping a close eye on, and that’s the part that borders the spine. There is a little “finger” of tumour that is nudging into the spine where it has found some space to fill. It is near the spinal cord, but not touching it. This little finger has not changed in shape since the previous scan, so that is good. Apparently, the nature of this type of tumour is to creep into any little space it can find. Such a nasty little beast! For now, we can rest easier till the next scan. The results I would say were ok, perhaps even good. Great would be to see some shrinkage, bad would be to see a lot of growth. So to be in the middle is, I guess, an ok place to be right now. I did ask Lisa what would happen if after each scan, there was just a little bit more growth, but nothing significant. She said that they would look at the overall progression, and should a change of treatment be warranted, it would probably be surgery rather than further chemo. I was glad to hear that, as I do feel that the chemo drugs have much worse effects than surgery. Especially on such little bodies, who knows what the long term effects are?
We also got some blood serum test results back. This was a blood test we did a few weeks ago to assess the antibody serum levels that Carys has. Chemo affects the immune system, so we had to do the serum test to see what vaccinations she needs. The results showed that the only antibodies she has is against Hepatitis B. Everything else was wiped out by the chemo, so we have to start again. We started off with 2 injections last Tuesday, and Lisa wants her to get the rest in the next few weeks to get her up to date with what she should have at this age. Poor Carys!

3rd Post-op MRI

Last Monday, Carys had her 3rd MRI post-op. Everything went much more smoothly than previous scans because we had a pre-med called Midazolam about half an hour before she went under the GA. Carys drank the sedative with some cordial to mask the taste, and the effects were quite quick. In just a few minutes, she became unsteady on her feet, and gave me lots of goofy looks. It was a little bit amusing to be the recipient of her giggles and lopsided grins. But at the same time, a little disconcerting to see a toddler so spaced out under the influence of drugs. We also had a very kind anesthetist who showed me how to cradle Carys in my arms whilst I put the mask on her face for the GA. She only struggled a little bit before she went under. This was much better than having me and the nurses pinning down each limb whilst Carys screamed and the dr held the mask over her face. When Carys woke up, she was also still under the influence of the sedative, so was quite calm, and not screaming as she used to do. She gobbled up a container of strawberries and a muesli bar before the nurse suggested to slow down! They were so worried that Carys would throw up, that they sent us home with a plastic sickie bag for the car. It wasn’t need though and she was fine for the rest of the day.
We see Lisa, our oncologist on Tuesday for a check up and the results from the MRI and urine test. I try not to think about it too much. When I do, I try to be positive. When I look at her, I can’t believe that there is anything wrong with her, she is so healthy, active and happy. She is growing up into such a delightful little girl. At the moment, she’s playing hide and seek with daddy. This is 2 year old Carys version: When daddy says “where’s Carys?” she’ll pop out and say “Here!” Sometimes, her version of hiding is to clap her little starfish hands over her face. She’s probably thinking “if I can’t see you, you can’t see me!’ It’s a real joy to play with her and she has us smiling and laughing all the time. But there is that little kernel of fear that just won’t go away. I am in the middle of a parenting course designed specially for parents of children with cancer. It has been very helpful to learn some coping strategies, and to be amongst parents in similar situations. One of the objectives I want to get out of the course is to live with the fear. I already know that it will never go away. It is part of me now, so day by day I learn.

Reflection

It’s been a while since I’ve posted here, mainly because not much has been happening in terms of treatment for Carys. In the past couple of months, our focus has shifted from Carys’s medical needs, to finding some kind of normal rhythm to our lives. There have been a few major events that have helped us feel more settled here – firstly, Ian’s permanent resident visa came through, so now he’s able to stay in Australia indefinitely. Secondly, we’ve decided to build a new house. And thirdly, we confirmed Tane’s primary school enrolment for February next year. Although it is still hard for me to think about the future, I am glad that we are able to make some plans to move on with our lives here.
The past couple of months have also given me time to reflect on what’s happened this year. A friend of mine in Hong Kong who has a daughter with a rare form of dwarfism, got me thinking about hope. Nicole blogs beautifully from the heart, and you can read about her story at http://www.madeline-hope.blogspot.com/ In one of her posts, Nicole talks about what a mother hopes for when she finds out she’s pregnant. The usual response is “I don’t mind if it’s a boy or a girl, I just want a healthy baby”. This was exactly what I thought when I was pregnant with Carys. But if I had known back then that my baby would not have perfect health, would I have not wanted her? Absolutely not! Does having less than perfect health, or not being ‘normal’ mean it’s a life that’s not wanted? Again, absolutely not. What I should have said back then was “I don’t mind if it’s a boy or a girl, I just want THIS baby.” Carys has given us so much love, joy and inspiration. Every day I marvel at how smart, funny, caring and beautiful she is. I just hope that she knows we feel blessed to be her parents.