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.