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.

All stable

We saw Lisa at the hospital today and had a good chat with her about the 2nd MRI results. She pulled up the images from the July scan and the one we had last week to show us what’s been happening inside Carys. In the past 2 months, it seems like not much has been going on at all!! So far, the remaining tumour looks quite stable, which is good news. The tumour is clearly visible on the images, running along the side of the spine, but there was hardly any difference in size and shape. Mum and Chris came along with us, so we were all very relieved when we saw that there was no change. Lisa seemed quite happy with the results too. In addition to the scans, the urine tests also showed stable levels of HVA – one of the hormones secreted by the tumour. Although the level is slightly above normal, it’s not increasing, which is good. Lisa believes that the tumour has had its big growth spurt, and now will remain stable. Though of course there are no guarantees. We continue with the waiting game, but at least we can breathe a little easier knowing that it’s not growing. Carys will be on 3-monthly MRI scans for at least the next year to keep an eye on things. If all stays stable, the MRI frequency will gradually decrease.

2nd MRI

You know you’ve been going to the hospital too often when a nurse thinks you work there! Carys had her 2nd MRI today, and the nurse who checked us in looked at me and said, “oh I’ve seen you around before. Do you work here?” It was funny, but a bit sad at the same time. The process today was really smooth. No waiting around and all done in a couple of hours. We didn’t give Carys a pre-med this time, to see how she’d handle the initial steps into the GA. But we’ve noted that she definitely should have one next time. As soon as I carried her into the treatment room and she saw the 3 guys in scrubs and the bench to lie down on, she really screamed and clung to me. It was heartbreaking to pry her little fingers off my jumper while she was crying out “mummmeeeee!!!” and help hold her down whilst the anesthetist put the mask over her face. So next time, I need to ask the nurse as we check in that we need a pre-med to keep her calm. I might need some too! Coming out of the GA was ok this time. We were ready with warm milk and strawberries, so it was a little easier. We will see Lisa next Tuesday to compare the 2 MRI images and see how the tumour is behaving.

waiting for more results

We saw Lisa our oncologist, and Michael our surgeon last Tuesday. We had a bit more time to discuss and digest the latest test results, though we are still in a bit of shock. Both doctors were ‘surprised’ with the results, as they were not expecting the remaining tumour to be as big as it is. From the pictures, the remaining tumour is like a little sausage running alongside her spine, behind the psoas muscle. It is 6cm long and about 1.5 to 2cm around. It’s hard to imagine Michael not seeing this piece during the surgery, so it is most likely to be new growth. The doctors are waiting to see how this tumour behaves before deciding on a course of action. If it progresses, then we go back to square one, with chemo, surgery and possibly radiation. Basically, everything becomes an option again. We are all hoping and praying that the tumour regresses on its own. Carys deserves nothing less than to be cancer free. So we’ll wait for the next MRI scheduled for Sept 6th. When we get the results from that, we’ll be able to compare with the last set of images and see how the tumour is behaving.
Carys, had her central line and kidney stent out, so she’s now more free. It’s easier for us too, not to have to pin up the tubes every day and go in to the hospital for line care every week. Though we might miss the nurses just a little bit. They are all so nice! Carys’s hair is now growing back. It’s a lot thicker than before and so soft. Everyone loves to give her head a little rub!

Tube free

Carys will have her Hickman (central line) out tomorrow as well as the kidney stent. It is apparently a pretty easy, straightforward procedure done under GA, and we should be allowed home on the same day. Whilst we are really happy to have the line and stent out, our patience with the hospital is wearing thin! We only found out on Monday that the procedure will be done on Wednesday! After asking about this for weeks, we only get 2 days notice. ah well, what can you do?? It might take us a little while for us to adjust to a tube-free Carys. And I wonder what she's going to think?? She's pretty well-adjusted to it, sometimes playing with it and saying "hee-man." We will have a chance to speak with Michael the surgeon tomorrow. I am keen to ask him about the remaining piece of tumour. Whether it's new growth and if further surgery is needed. Michael didn't mention this piece before, so I'm a bit curious as to why that is. I spoke briefly with Lisa today and she wants to keep a very close eye on the remaining tumour, so she's brought forward Carys's next MRI by 1 month. With kids like Carys who are in the "intermediate risk" group, it is impossible to predict how the tumour will behave. We have an appointment to see Lisa next Tuesday, so we'll be able to discuss next steps in more depth then.

living with cancer

Things have been going so well, I guess our run of good luck had to come to an end. We got the results back for Carys’s MRI and MIBG scans. The images showed a small piece of tumour remaining behind the psoas muscle. That’s a big muscle at the back of the abdomen that controls the hip. The news came as quite a shock and we are devastated. After the surgeons’ confidence that he had got almost all of the tumour, we were hoping for perhaps small, microscopic bits left behind. But this piece is quite visible on the MRI as a small chain of little lumps, and showed up as ‘hotspots’ on the MIBG. When I asked Lisa what this meant, she said it indicated that the remaining tumour cells are alive and viable, though she hopes that this small piece will remain stable. She hopes that the tumour has had its big growth spurt since it was so large at diagnosis, and won’t continue to grow now that it has been de-bulked. But she couldn’t rule out further growth. The current protocol is to monitor the tumour every 3 months with an MRI, and MIBG if needed. On the positive side, the doctors still think that they removed more than 90% of the tumour, which was the original aim. So I guess the surgery can still be called a success. But for us, it wasn’t the outcome we had hoped for. We wanted for all of this to be over, but now we have to figure out a way to live with the quiet, constant fear. We get through day by day and just cherish and savour our time with both Tane and Carys. But thoughts of the future paralyse me. Where should we live? Should I go back to work? Should I continue my studies? and the most perplexing question of all - how do we tell Carys that she has cancer??? Most of the time, I tell myself to just get on with it, but at other times, it all seems so hard. And I hate that feeling of being so out of control and powerless. The cancer is like an insidious little beast that has a mind of its own. When I look at Carys, I can’t believe that it’s still alive inside her. She’s such a brave little girl. She takes everything in her stride even though she has had to endure more in her 19 months than anyone should have to endure in a lifetime. She continues to do really well. She’s perked up a lot since the chemo stopped and she recovered from the surgery. Although she never really seemed 'sick' per se throughout the treatment, she was quite quiet and passive. Now she’s much more active and chatty and learning new things all the time. When she reaches out her arms for Ian or me and says “duddle” instead of “cuddle,” and wraps her arms around our neck, it’s just magic.

Pink cheeks and bright eyes

We had a very busy first half of the week, with an MRI under GA on Monday, and MIBG on Tuesday and Wednesday. The MRI went very smoothly, we only had to wait for about half an hour from the time we arrived to when we went in. So no repeat of the 5 hour wait of the last CT scan! The hard bit was putting Carys under the GA. She recognizes the mask now, so when she saw it, she really screamed and struggled. It’s awful watching your child be held down and fighting to resist the mask. Thankfully, the gas is quite quick, and she was asleep in less than a minute. The anesthetist was as kind and considerate as he could be. He even had several “flavours” that he could put inside the mask, so I chose chocolate for her. I guess this is supposed to cover the smell of the gas, but I’m not sure it helped much! The scan itself took about 40 mins, and when she woke up, she was pretty upset. It’s like being woken up suddenly from a really deep sleep – who wouldn’t be grumpy! The next day was the start of the MIBG test. On Tuesday, a radioactive isotope was injected and a set of images taken 4 hours later. The isotope must be either very toxic or very delicate, as it comes in a metal covered syringe and must be administered by a doctor. The images taken on Tuesday were more of a benchmark, to have something to compare to. It only took about 15 mins so she wasn’t sedated. Being strapped down in a machine was not a happy experience and much crying and screaming ensued, though we did have “in the night garden” to watch. On Wednesday we had to go back for another set of images taken 24 hours post-injection. The MIBG isotope is taken up by neuroblastoma cells so any tumour cells in the body show up as hotspots on the images. The images are taken from top to toe, so her whole body is scanned and checked. The scan on Wednesday took about an hour, so she was sedated for this with an oral medication that just made her very sleepy, but still rousable. Because she had to be sedated, Carys had to be checked over by the nurse beforehand. She’s getting so used to medical equipment now that she even took the stethoscope disc from the nurse and put it to her own chest, and took the ear thermometer and put it in her ear. The nurse was trying to sweet-talk her, but it was like Carys was saying “alright then, lets get this done, no pfffafing around!” Carys stayed asleep throughout the scan which was good. Sometimes kids wake up half way through and are understandably very upset. When the technicians had finished, we took Carys back to the nurses’ station to wake up. She woke up quite groggy and floppy. She kept trying to sit up then falling down again. She asked to get down from the bed, and when we put her down on the floor, she staggered around like a very drunk person. The nurse and I couldn’t help laughing a little at how funny she looked. We had quite a hilarious trip home, with Carys trying to sing along to the radio and looking out the window upside down! After a good nap, she was back to normal – no more drunken baby! So now we wait till next Tuesday when we have our next appointment with Lisa. We are very hopeful that the results will show no, or very little, residual tumour.
Last week was school holidays, so we went to Sorrento, which is a beach town about an hour and a half from Melbourne. Very dear family friends – Aunty Kathy and Uncle Stephen kindly let us borrow their beach house for the week. Although it’s winter here, and quite cold, it’s still lovely going down for walks on the beach. We explored the ocean beaches and both Tane and Carys loved the big waves and rockpools. It was a bit difficult keeping and eye on Carys as she thought the ocean foam was one big bubble bath and kept yelling out “BUBBBOOOO!!!” and running towards the water. Yes, she does love her bubbles! When we came home, my sister-in-law Nikki commented on how pink-cheeked and bright-eyed Carys looked. The fresh sea air did her (and us) good!