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!

Living in the moment

We have enjoyed the past few weeks of recovery and relaxation at home. Carys has gotten on with the business of being a toddler. She’s very busy these days – her favourite toys are her stacking cups, handbags and everyone’s shoes. Although we try to keep our shoes out of sight, she’ll go hunting for them and when she puts them on, she’ll say “por-por shoes” or “Tane shoes,” depending on whose shoes she’s found. So whilst we have been happy to live in the moment of this post-surgery period when everything looks so good, the reality is that it’s not over. We just got a letter notifying us of Carys’s next MIBG test which is scheduled for July 13-14. The MIBG test involves a radioactive isotope injected into her body via her central line and a set of images taken just after injection, and again 24 hours after injection. The radioactive dye is taken up by neuroblastoma cells, and so will show up on the images. The dye is also taken up by the thyroid gland, so we need to give Carys iodine 4 days before and 1 day after to protect it. It tastes really bitter, and even mixing with milk or juice doesn’t really mask the taste. Maybe I’ll try ice cream this time! We have also just done another urine test. Neuroblastoma tumours produce certain hormones, so this test will measure the levels of 2 of them. On the first urine test we did, the levels of these 2 hormones were grossly elevated, so we hope the levels have gone down now. Actually ‘catching’ the wee was an exercise in patience and perseverance! At the end of the day, I only managed to fill the sample tube with about 2cm of wee. We need to do this every 3 months, so any tips from people who have experience with this would be greatly appreciated! Our next appointment with Lisa is on Tuesday 22nd, so hopefully we will have the results of the urine test then, as well as the further pathology tests on the tumour that the surgeons removed.
The grandmother of a little nb angel recently gave me the advice to live in the moment, as she was taught by her granddaughter. It may be a cliché, but it’s so very hard to do. Whilst we cherish every moment with our kids, laugh at their little quirks and love everything about them, there is always that background fear of relapse for Carys. Although the drs are all really pleased with her progress, they can’t guarantee that she will be completely fine. I have been reading more about nb, now that I can do so without getting too emotional, but it’s still really hard. In most cases, a relapse has a very poor outcome. So much more research is needed for this disease to help the little nb fighters. To find out about one program being run out of the RCH, take a look at http://www.yamsfoundation.org.au/

home and healing

The surgery was a huge success and Carys has amazed everyone by getting back on her feet just 3 days after the operation!
Immediately after the tumour was removed, the anesthetist called me on my mobile to give us an update. She said the surgery was on track, the tumour had been removed and that Michael (surgeon) would be another hour and a half to close up before coming out to talk to us. We were all relieved and happy to hear that, but still a bit anxious to find out how she was, and the details about the surgery. When Michael came out to see us, he looked tired and quite serious. There were a few things that he was concerned about and these were:
- The tumour was deeper into the psoas muscle that originally thought. The psoas muscle is deep at the back of the abdomen. He had to dig deep into this muscle to remove the tumour cells. The concern was that there might have been some damage to the left femoral nerve which runs through this muscle. If this nerve was damaged, the result could range from numbness on the left thigh to inability to lift the left leg. We wouldn’t know if there was any serious damage until she woke up and started moving.
- There was considerable bleeding to the extent that he had to tie off the left iliac vein. This vein is part of the circulatory system to the left leg and kidneys. Although tying off the vein is permanent, surrounding blood vessels are able to compensate for this and take up the slack. However, he was concerned about circulation to the left leg, and would monitor it closely for the next couple of days.
- The tumour around the aorta had a clear plane between the two, so he decided to use a scalpel to scrape the tumour cells off, but because it was so delicate, there were some holes in the aorta which required stitches. Although bleeding from the aorta had stopped, this also had to be monitored closely.
- Because of all the bleeding, Carys had to have over half of her blood volume replaced. With such a considerable transfusion, all of her functions had to be monitored closely overnight.
On the positive side, Michael felt he had been able to remove more than 90% of the tumour mass. To be able to get almost all of the tumour out means a much better outlook for Carys, so we were very happy about that. Now we just had to wait for her to wake up, and get through the night without any complications.
When we were paged into the recovery room, I went in first, whilst Ian stayed with Tane in the waiting room. She looked so small in the cot with so many tubes coming out of her. I didn’t count them all, but there were multiple lines coming out of the hickman, both arms and a catheter. She also had a nasal-gastric tube put in during the operation due to all the pushing on the stomach. Though as soon as she woke up, she pulled it out. When I saw her she was only semi-awake and still pretty out of it. But when she saw me and said “mama” I was just overwhelmed with relief, gratitude and joy. I really wanted to hold her and snuggle into that warm soft spot on her neck, but all I was able to do was stroke her head and kiss her feet. Ian and Tane came in to be with her for a while. Although she was pretty drowsy, she kept looking at us, and I’m sure she was really happy to see us. As she woke up some more, she moved all her limbs and her left leg was pink and warm, so we were able to let go of many of the concerns that we had. The next few hours were still pretty critical, so they transferred us to ICU for the night. Unfortunately, because of all the equipment in ICU, there was no space for an extra bed for a parent. I hated to leave her there, but after much reassuring from the nurses, I headed home. Tane must have heard my voice when I came home, because he came out of his room and asked “Where’s Carys?” When I gave him a hug he said “no I don’t want you, I want Carys.” My poor little man has had to grow up so much emotionally. We have kept him involved in Carys’s treatments and hospital visits, whilst giving him lots of reassurance. It’s hard to know what’s going on in a four year olds’ mind, but he has handled everything beautifully, and I’m so proud of him. That first night, he wanted to sleep in Carys’s cot, luckily he just fit! I could totally understand him wanting to do that, to feel close to Carys. If I could fit, I would have climbed in next to him!
When I went back to the hospital the next day, Carys had had a good night, sleeping mostly. She was still pretty sedated, on morphine and ketamine. Later that day, we were moved up to the ward, and the ketamine was turned off. Some of the tubes in her arm and the catheter were also taken out. Over the next couple of days, Carys kept improving rapidly. By Friday, she was eating, drinking and pooing normally, and she came off all the IV drips. As soon as she was free, she said “down” so Ian carefully lifted her down from the cot. I was too scared to do that because her scar is from one side of her tummy to the other, in a rainbow shape over the belly button, and I was afraid to hurt her. But she was happy to be free of the cot and after a few drunken looking steps, she was off out of the room and saying “hi” to the other patients on the ward!
We saw both Lisa and Michael today for Carys’s post-op review. They were both extremely happy with Carys’s recovery. Because more than 90% of the tumour was removed, it is unlikely that she will need further chemo. In neuroblastomas, remaining tumour cells usually regress and die off on their own. But Carys will still need regular scans and urine tests every 3 months for the next 12-18 months. Then if all looks well, the testing will be less frequent.
We are all so incredibly happy and grateful that Carys has come through all this so well. Such a huge stress has been lifted, that I feel like smiling all the time. Luckily Australians are a friendly lot, and smile back. If we were still in HK, people might think I was a bit of a loony!

In recovery

Carys has come though the surgery and is recovering well! We are all so relieved and happy that it went so well. Carys is trying very hard to be back to her cheeky self - dropping her dummy out the side of her cot and saying "uhh-ohhh!!"
It ended up being a 5 1/2 hour surgery which was the worst, most excruciating wait we have ever had to go through. It was awful to think of her little body being open for so long, and what was happening in the operating theatre. I will post a bit more detail once I've had a chance to process all the information about the surgery that we've been given. But I know that many people are waiting anxiously for news, so just a quick post to let everyone know that Carys is doing wonderfully well. All her doctors and nurses keep commenting on how well she's doing. A very deeply grateful and heartfelt thank you to everyone who has been sending messages of support and encouragement. It's really helped us all to get through this. Lots of love from Carys, Ian, Donna and Tane.