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.

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!

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.

the wait begins......

It's the big day today - Carys has her surgery to remove the tumour. I've given her a big kiss and cuddle and left her in the hands of the surgeons. It's going to be at least 3 hours, and so the waiting begins...... Gung Gung (Carys's grandpa) drove us to the hospital today and we arrived at 7am. We saw a series of nurses, anesthetists and Michael the surgeon, all asking the same questions. Although it's a bit of a pain, it is also reassuring to have all those checks and double checks. It's hard to remain calm and composed when I know what's about to happen to her, but i need to so that Carys doesn't pick up on my anxiety. Carys was her usual happy self this morning, toddling around the waiting area, visiting the other families. There weren't many people in our waiting area, so she kept pulling me down the corridor to the other one which was full as if to say "this one's much more fun mum. Let's wait here!" They had to do some blood tests before the surgery, so that meant a bit more waiting, but it wasn't too bad. Not like the CT day!
Por Por (Carys's grandma) will bring Ian and Tane to the hospital later today. We told Tane last night that Carys was having her operation today and he was quite concerned. Once when she woke during the night, Tane came out of his room and said he wanted to see if Carys was ok. Usually he sleeps like a log and doesn't bother coming out. If we had let him, he would have slept next to her cot. But we thought none of us will sleep much with Tane tossing and turning on the floor! But it was a very sweet thought!
We will be at the hospital for at least 6 days. For the initial 2-3 days post op, she'll be on very heavy pain meds so she should be comfortable.
Carys sends her love to everyone who has been wishing her well. She's a strong little fighter and will come through this with flying colours.

All set for surgery

Carys had her CT scan last Thursday, which turned out to be quite an ordeal. We fasted from 7am and were at the hospital promptly at 12 noon, as per the instructions we were given. We ended up waiting not 1 or 2 hours, but almost 5 hours until she was put under the GA for the scan at 4.45pm! So by the time she came out, it had been 10 hours since she had eaten anything. To have a 15 month old baby fast for 10 hours is just cruel. I was fuming at the time, and made a complaint to the hospital which they politely called “feedback.” Carys did extremely well though, happy to play and look at books all day. It was only after she came out of the GA that she started screaming. She was just so hungry and disoriented that she didn’t know what to do except scream.
We met with Michael Nightingale, Carys’s surgeon on Tuesday, who is a lovely, patient and gentle man. He explained the current protocols for treating neuroblastoma with surgery and the different schools of thought that exist around the world. There are some doctors who prefer to leave these tumours alone, some who believe resecting as much as possible is best, even if it means scraping blood vessels with a scalpel! Michael’s opinion, based on the latest research is to resect as much as possible, but without taking high-risk measures such as scraping blood vessels. A successful outcome would be to take out at least 90% of the tumour mass. Apparently, in most cases, remaining cancer cells are stable or even regress on their own or with further chemo. Radiotherapy is rare, as it can be more damaging than beneficial in children under 6. Then he discussed her CT scan results and showed us the films. Chris (who is Carys’s uncle and a surgeon) was with us, and got much more out of the pictures than we did! Even though Michael pointed out the different parts, it was all just shades of grey really. The scan showed that the tumour has responded very well to the chemo and is now one third of the size it was before treatment. However, it is still wrapped around the aorta and iliac vessels on the left, which are the main blood vessels in the centre of the body and that supply blood to organs and her left leg. Operating around these vessels will be the most difficult part of the surgery. With the treatment plan that Carys is on, there was also the option of another 4 cycles of chemo. But both Michael and Yves, another pediatric surgeon who heads up the Monash Children’s surgical team, believe that further chemo is not going to make the surgery any easier.
In difficult cases, Michael and Yves operate together as a team, so that’s what will happen in Carys’s operation next Tuesday. We all feel much more confident that there will be 2 experienced surgeons operating on Carys. You can’t ask for more than the head pediatric surgeons from both the Royal Children’s Hospital and the Monash Children’s Medical Centre. I also suspect that both surgeons are looking forward to the operation, as Cary’s case is interesting and rare for them.
So everybody is set to go next Tuesday morning. All except me. I am feeling so nervous about it all. I know that she needs this, and that she is in the best hands, but I feel just sick with concern about what she has to go through. When I think about the pain I was in after having a c-section, I can’t bear for Carys to have to feel that too. At least I knew why my tummy hurt, but Carys is going to wake up and not know why she’s in pain. There will be pain management for her, and she will be connected to various drips and tubes that will make things as comfortable as possible for her, but there will be times when she will feel it. Then there are all the risks associated with major surgery. Even though everyone tells me that little ones are tough and resilient and have great healing powers, it’s still a lot for a little body to go through. We will be in hospital for at least 6 days, which will not be fun. Again, I’m glad we are here and have the support of parents, family and friends.

round 4

Carys has now finished the 4th and hopefully last round of chemo. 3 days of drugs again, one long and 2 short. the first long day was much better than last time, as Carys managed to have a nap for an hour or so in the afternoon. One of the drugs time time was the nasty red one in the black bag - doxorubicin. Perhaps that's why she fell asleep, her little body was just exhausted. She's also on the ondansetron wafers, which helps with nausea, so no vomiting or loss of appetite. So far, all has been well- hooray! Carys's CT scan is booked for thursday. This one will be done under a general anesthetic to keep her absolutely still for clear pictures. If the surgery goes ahead, the surgeon will need to use these pictures to do the operation.

little sunshine

Carys had a bit of a rough day yesterday. She was not her usual self, and all she wanted to do was snuggle with us. She felt a bit hot, so we monitored her temperature, and by around 5pm, it spiked to 38.4. Any reading over 38.0 requires a call the the cancer ward, so we did that and the nurse in charge asked us to bring her into A&E. Since it was around dinner time, I wanted to feed her and give her milk before we left, because I knew there would be nothing for her to eat at the hospital. But once we'd done that, her temperature came down again. I called the ward to tell them we would not be coming in and they were not happy. I just felt that the best thing for carys was to rest in her own bed. Our previous experience of A&E was pretty awful. The bright lights, loud noises and freezing cold air conditioning were not good for her or me! We monitored her temp throughout the night and of course, if it spiked again, we would have brought her in, but luckily it didn't. This morning when she woke up, she was back to her usual happy self.
We saw Lisa Orme today for another check up, and Carys continues to do really well. Lisa could hardly feel the tumour and said it was way in the back of the abdomen. She also had a look inside Carys's mouth, but couldn't find any ulcers. This is a common side effect of the chemo, so it's good that Carys hasn't suffered from that as it can make eating and drinking difficult. She needs all the nutrition she can get at the moment. Although she's got a good appetite and eats well, she's not putting on any weight. This is probably because of the treatment and the tumour itself. It's not until we see other babies around her age that we realise how petite she is. Once this is all over, she'll have lots of time to catch up, I'm sure. But we do love her tiny little feet - just the right size to nibble on!
Carys's next round of Chemo starts tomorrow and will run over three days to finish on Friday. This round will be like the last, one long day and two shorter days, all done in the day oncology unit.
The weather in melbourne has been a bit cool and rainy lately. The other day, when Carys woke up from her nap, so did the sun. We though how nice it was that the sun wanted to say hello too!

how does it all work?

A few friends have been asking about how Carys gets the chemo treatment, so I thought I'd give a quick explanation in case others are curious, but thought it might be a bit weird to ask. Before the treatment started, Carys had a central line inserted. In her case, she has a double lumen Hickman line. The line gets inserted surgically under a general anaesthetic. The surgeon tunnels under the skin in her chest to insert the line up to her neck, where it is then inserted into a vein and down that vein to the main artery that is connected to her heart. The line into the main artery is necessary because the chemo drugs are too strong to be administered into little arm veins. The line remains in place for the duration of the treatment, so each week, we need to go to the hospital for line care and dressing change. The dressing around the tube that comes out of her chest gets changed and cleaned. Carys is not a big fan of that as it's like a big band-aid being pulled off each time, and a cold, strong smelling wipe around the chest. She gets braver each time, and there are not so many tears now. The comfort clinician has special chocolate scented bubbles to distract her with! Then the tubes get flushed with saline and a drug called heprin, so that the inside of the tubes don't get blood clots. The ends of the tubes have these smart little valves that can be accessed by syringes, so they can attach them to drips which is how she gets the drugs into her body. They can also draw blood from the line for testing, but they don't tend to do that unless they have to access the line for something else, as each time they access the line, there is a risk of infection. So most of her blood tests are done by a fingerprick and squeeze to take a little bit in a vial. So that's how it all works!

round 3

Carys finished round 3 of chemo on Friday and so we’re now half way through the 4 cycle treatment plan. This round involved 2 different drugs over 3 days. Because she has been doing so well, we could do the treatment as an outpatient, rather than being admitted and staying overnight. The first day was very long – 8.30am till 7pm which was a bit difficult for her as she couldn’t really nap because it was so noisy. Most of the time, we’re happy that the day oncology unit is bright and cheerful, just not at nap time! By around 5pm she was so tired she didn’t know what to do with herself except scream, so the nurse found a room to move into so that she could finally sleep. The next 2 days were much shorter as the drugs on those days didn’t require pre and post IV hydration. One of the drugs, etoposide, usually causes quite bad nausea, so the nurse advised regular doses of the anti-nausea medicine. Since Carys didn’t like taking the syrup last time, we tried the wafers which were much better. They’re really small, and dissolve on the tongue in half a second. So far, she’s been in good spirits and not really showing any signs of feeling nauseous.
Apart from the treatment and hospital visits, Carys has picked up a few new skills. She’s taking steps on her own, started drawing and is building up her vocabulary. My favourite is when she drops something and says “uh aaaooww.” Just too cute! She also says “birrrr” for bird and, then caw’s like a crow. She’s even figured out how to turn on the TV with the remote and knows how to annoy tane by turning it off at the power switch when he’s watching his programs.

it's shrinking!

Carys's tumour is shrinking! We saw Lisa yesterday for a check up, and she was very happy with Carys's progress and the way she is tolerating the chemo. Lisa said she could only feel the tumour with deep palpations. The difference the past few weeks of treatment has made is striking. Before treatment started, the tumour was clearly visible as a bulge on the left side of her tummy. Now, we have to press deeply in order to feel it. Lots of smiles all round! We still have to do 2 more cycles of chemo before the next CT scan. It is great that the tumour is responding to the treatment, though the CT scan will let us know if it has shrunk away from the main blood vessels and spine to make surgery possible. We are very hopeful that this will be the case. Carys's neutrophils have dropped even more this week. I thought last weeks reading of 0.4 was the low point, and that it would start to go up again. But this week it was 0.25. So we need to be extra vigilant for fever and infections. Outwardly, she's still her same happy, active self. Less hair, but not a baldy like her daddy yet :)

Rainbow man

It was rainbow day at Tane's kinder today. So he dressed up in as many colours as possible, and wanted to take Carys's new hello kitty stuffed toy that Jum and Yume sent for her. To say that he's loving kinder here would be an understatement. He gets so excited about going, that he practically runs down the road dragging me along, and when he sees his friends going in the gates, he shouts at the top of his voice "HI CLASSMATES!!!! HIIIII!!!!!" His teacher Sue is thrilled to have him, and says he's doing really well- participating, making friends, exploring different activities...... I'm so glad that he's fitted in and adjusted so well, and just so happy here.

Carys had her weekly blood tests on tuesday, and she's neutropenic, which means that the white blood cells called neutrophils that fight bacterial infections, is very low. She has a bit of a runny nose, but otherwise is fine. We went to the Botanical Gardens yesterday for a picnic with Julie and her little boy Riley. Carys kept wriggling and screaming to get down and crawl around on the grass, and although I was a bit apprehensive, we let her get down and close to nature. It's hard to know what's the right thing to do, but I figure we can't keep her totally sterile! Her happy face and "ayyaa yaaa's" as she crawled around with the grass between her fingers, assured us that indeed, it was the right thing to do!

round two

Carys started her second round of chemo yesterday. This time, she had 3 different drugs administered through her central line, one after the other. Each one took an hour, then she had to have 3 hours of IV fluids. So all up, we were in the day oncology unit for the day and didn't have to stay overnight. When they hung the 3rd bag of drugs to her trolley, and I saw that it was a black bag, it made me want to cry. I had read on Adrian's blog http://adrianau.blogspot.com/ that the black bags of chemo drugs are the really strong ones. It was also red in colour, whilst all the other ones she's had so far have been clear. It was awful to watch the poison dripping into her, and worrying how her little body would take it. Throughout the day, she was happy to play with a succession of toys provided at the hospital, and watch the comings and goings of the other day onc patients. Tane and Ian also came in to visit in the afternoon, and Tane was very helpful with keeping Carys supplied with toys! The only thing different about her yesterday was her appetite. All she seemed to want to eat were hot cross buns! Luckily I had brought 2 with me!

Today Carys seemed fine, except for her eating. She threw up most of what she ate, though she did manage to eat and keep down a whole banana. In fact she screamed at Ian when he didn't spoon it to her fast enough! The hospital did give me some anti-nausea medicine, but when I tried to give it to her, the screams and tears seemed the greater of 2 evils. So unless the vomiting goes on for more than another day, I'm not going to try and force the medicine down her throat.

here we go

this morning was hard. Carys has started to lose her hair. Although it's to be expected, nothing can quite prepare you for the suddenness. I took Carys to her usual tuesday check up and as we got ready, I didn't notice anything different about her. It wasn't until we got to the hospital and I went to take her out of the car seat that I saw her t-shirt covered in hair, and little wisps caught between her fingers. As I began to cry for her lost hair that had just begun to curl at the back of her neck, she just looked at me with her smiley face. I could just imagine her saying, 'don't worry mummy, it will grow back. just be patient.' Perhaps as adults, we bring forth our own preconceptions and fears of cancer and cancer treatment. But to a baby or child, it's just the way things are. I could learn a lot from that. In fact, the kids in the oncology wards here and in HK are just amazing. I said to Ian that it's both heartbreaking and inspiring to see these kids. Heartbreaking to see their little bald heads and bags of chemo drugs on IV trolleys, but so very inspiring to see them playing, chattering away to each other, and just being normal kids. Their strength of spirit is impossible to describe. It goes beyond amazing.

Carys's doctor continued to be encouraged by her progress, and has scheduled the next round of chemo to start on monday 15th. This time, it will be 3 different drugs administered over the course of a day, so we don't have to stay overnight in the hospital.

On the bright side, Ian and Tane arrived tonight! It's soooooo good to be together as a family again. I can't believe how much Tane has grown both physically and emotionally. He's up to my chest in height!!

one day at a time

January 29, 2010. That day will always be etched in my memory as the day our world turned upside down. I took Carys to see her pediatrician for her 1 year check up. I told the dr that I had noticed a lump in her abdomen a couple of days ago that I had initially thought was just a hard poo. Since it was still in the same place, I asked him to take a look. As he pressed on her tummy, he mmm-ed and mmhhmmm-ed though his face remained neutral. He advised us to have an ultrasound straight away and called a friend just a few minutes away on Nathan rd. After we had the ultrasound, I read the radiologists report whilst walking back to the pediatrician's. "suspected neuroblastoma...." the report said. I had no idea what that was so did not allow myself to worry just yet. After the ped read the report he said it was serious and that we should go to Queen Mary hospital straight away. Neuroblastoma was a type of tumour, though no mention of the C word yet. In tears I called Ian to meet us at the hospital. It was there, in the waiting room that I called Chris to tell him where we were and to ask him what a neuroblastoma was. After a moments silence came the reply "oh man, that's cancer... " I felt my whole body go numb, then tingly as I had the sudden urge to throw up. Don't panic, don't panic I kept telling myself. It's just "suspected" Although we were admitted to the hospital, we were allowed home leave since Carys looked well, and they couldn't begin further testing anyway. After we got home that night, the tears came uncontrollably. The thought that we could lose our beautiful, sweet daughter was too much to bear. My little big man Tane, tried to comfort me, by saying "don't cry mummy, take deep breaths like this uhuuuuu" All I could do was hold him tight and try to take his advice.

The next day, we went back to Queen Mary, met the pediatric oncologist and began the testing. over the next few days tests would confirm that it was indeed neuroblastoma. During that time, I was in constant contact with Chris and mum, who were gently urging me to bring Carys back home to Melbourne for treatment. As Carys and I went back and forth between home and Queen Mary, I thought to myself that there's no way we can continue doing this for months on end. There were no support or facilities for parents/carers at the hospital. Not even a shower! Ian and I both felt overwhelmed by the prospect of having to manage on our own in HK. Once we made the decision that we would move back to Melbourne, it was like a huge weight had been lifted. During all of this, Chris has been hugely supportive in every respect. Talking to the drs in HK, lining up drs in Melbourne, helping us make sense of something so complicated when we are still in a state of shock, and just being my incredibly loving and caring big bro. Words cannot express how extremely grateful i am for my big brother, I would not be able to cope with this without him.

So one week after the first ultrasound, Carys and I arrived back in Melbourne, and a few days later, we saw Lisa, one of the ped oncologists at the Royal Children's hospital. The remaining tests were done in Melbourne, and the final diagnosis was stage 3 neuroblastoma, favourable histology. The treatment plan is 4 cycles of chemo then another CT scan to re-assess the tumour for surgery.

We have now had the first round of chemo and so far, Carys has tolerated it amazingly well. Throughout all of this, Carys is our inspiration and strength. She remains her sweet, smiley, courageous self. She is already winning the hearts of the hospital staff. Whilst we were there for the chemo, nurses kept popping in and saying " oh, so you're the cutie everyone's talkig about!" Lisa is very happy and encouraged by Carys's progress so far. She is positive for a good outcome, though I haven't asked her about percentages. Anything less than 100% full recovery is not good enough for me. I need to believe that Carys will make it through this and we will share all the joys and battles of a mother-daughter relationship for many years to come.