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/
Monday, June 21, 2010
Tuesday, June 1, 2010
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!
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!
Thursday, May 20, 2010
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.
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.
Tuesday, May 18, 2010
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.
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.
Thursday, May 13, 2010
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.
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.
Sunday, May 2, 2010
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.
Tuesday, April 27, 2010
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!
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!
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