Long-term care team

Carys has reached a big, positive milestone in her cancer journey, and that is being transferred to the Long-term Care Team. This means that her doctors feel her condition is not as critical as it once was and that she can start to ease off on the regular testing that we do. So now, instead of MRI scans and urine tests every 3 months, we are now going to do them every 6 months. Her last scan was in January, and the results showed stable tumour, with some calcification. This is really good, as calcification basically means those cancer cells are dead. The calcification showed up as little white spots on the scan. Now that I have had time to think about the results, I wonder what would happen if the whole tumour calcifies? Being so close to her spine, would it affect her movement? hmmmmm, a question for our next visit! 
When we went to visit our long-term care team, we met with an oncologist, nurse, dietitian, psychologist, neuropsychologist and teacher. There are so many late effects that chemo can cause such as hearing loss, dental problems, movement problems, learning difficulties, growth issues, psychological issues, fertility problems and even secondary cancers. Since Carys's chemo regime was relatively short - 4 cycles, I hope that she won't develop serious late effects. She looks so happy and healthy now, it's hard to imagine that the chemo would have lasting effects on her. But I do remember during our first chemo cycle, when Carys somehow managed to disconnect her IV tube that was pumping the chemo drugs into her central line, and how the nurses freaked out and rushed to put on their protective gear whilst shouting at me to wash my hands with soap and water, because I was standing there holding the dripping tube. That really hit home how toxic the chemo drugs are! 
For her next check up in 6 months time, her dr has ordered an MRI, MIBG, urine test and hearing test. 

"Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light. - Author Unknown"

double scan time

wow, I can't believe we are now 2 years post surgery! Carys has been doing amazingly well. The MRI scans we have every 3 months continue to show that the tumour remains stable. And the urine tests are staying at the normal level. I think her immunity levels are also back to normal. I've noticed that this winter, she's only had a couple of colds so far, and she recovers really quickly from them. Compared to last winter when she seemed to be sniffling and coughing the whole time. In fact, I seem to be the one who's hit the hardest when a cold goes through the family! Since it's been 2 years since Carys had her surgery, Lisa recommended to do an MIBG scan as well as the regular MRI scan in July. The MIBG is different in that a radioactive isotope is injected into Carys, and full body scans are done right after injection and again 24 hours later. The neuroblastoma cells take up this radioactive isotope, so when we compare the 2 scans, we would be able to see where the cancer is in her body. The MRI only scans the abdomen and pelvis, so it will be good to have the MIBG do a head to toe check. I am a bit worried about the actual injection as it's fairly large in volume and has to be administered slowly to make sure her blood pressure doesn't drop. The last MIBG we had was injected straight into her central line, so she didn't feel anything. But since she doesn't have that anymore, they'll have to insert a needle and tube (cannula) into her vein. We plan to use some topical lidocaine patches to numb the skin prior to being jabbed - I hope they work!

Holding my breath

I know this sounds like a weird title for a post, but I’ve been feeling this way lately – holding my breath, not daring to get too excited. You see, last time we scanned and urine tested in September, we had some very positive, encouraging results. The urine test measures the levels of catecholamine’s in Carys’s wee. The tumour secretes this hormone, so the test is used primarily as an indicator of the presence of neuroblastoma. The first time Carys was tested for this back in HK, her levels were “grossly elevated.” I can’t remember the exact number of the level, but this was the test result that made us decide to come back to Melbourne. Up until then, all her tests had been imaging, so it was the presence of this hormone in such high levels that made the beast inside Carys so very real for me. Since the surgery, the levels had been “higher than normal.” Then in September, the levels fell within normal levels! Could this mean the tumour was regressing? Quite possibly, said Lisa our oncologist. The tumour is still the same size in the scans, hence the reason for our cautious optimism. If we continue to see lower catecholamine levels, hopefully, the tumour itself will start shrinking. Our next scan and urine test is scheduled for Dec 23^rd, and I keep reminding myself to breathe……..

This is now

Whenever I open up Carys's blog I see her as she was in the midst of treatment. I love the photo of her holding Tane's hand at our favourite park. It was such a lovely day, getting out in the sun and fresh air. And I love her little bald head. It was perfectly round and soft. But she has grown up so much since then, with beautiful curls......

At the local market, they have face-painting on Saturday's. Carys asked for a butterfly balloon, then when she saw the other kids having their faces painted, she asked for a pink butterfly, with sparkles (of course!)

On a recent holiday down at Sorrento, the kids loved going down to the beach every day. This was at Koonya back beach.

Near Sorrento, there is an amazing garden called the Enchanted Maze. Here's Carys driving the vintage tractor at the Enchanted Maze.

The fairy garden at the Enchanted Maze was bliss for Carys. She ran around giving all the fairys a kiss!

Everything stable

It’s been a while since our check ups with our oncologist Lisa and surgeon Michael, and now I’m long overdue for a blog update! In all our previous check ups with Lisa, further surgery was always an option should the tumour progress It was quite reassuring to know that we had this option. Even though I hated the thought of putting Carys through another major surgery, it made me feel a little less helpless in that some action could be taken if need be. However, in this past cycle of scans and results, we also met with Michael, whom we hadn’t seen since Carys’s first operation. After reviewing all her scans over the past year, Michael believes that another surgery at this stage would be too risky. The tumour is so close to the nerves running along Carys’s spine, that a total resection would inevitably result in nerve damage. Since the tumour is not affecting Carys’s health in any adverse way, it would not be in her best interests to operate. I felt great respect for Michael when he said, “sometimes the hardest thing to do, is to do nothing at all.” It echoed my sentiment exactly as a parent having to just sit tight and wait. And from Chris’s perspective as a fellow surgeon, he felt that a good surgeon is one who knows when to not operate.

Although it is a relief that we don’t have to go through another surgery, we have to find the strength to keep going with this beast inside her. At the parenting course I did on coping, a mantra we were taught went “hello fear, my old friend.” At the time I learnt this, as part of a meditation exercise, it was too scary to even repeat this in my head. But now, this is just how I feel. We have come so far, with the fear constantly with us like an old friend. Not one that I want or like, but one that I need to accept.

A Double Life

As life moves on and becomes filled with ever more kids activities, I sometimes feel as though we are living a double life. We have met lots of new friends through Tane’s school and Carys’s music class. However Carys’s cancer is not a topic of conversation that is easy to bring up. Her hair has grown back all soft and curly, so she doesn’t look like a cancer patient anymore. In a way, it is refreshing to be just like everyone else, dealing with normal, everyday things like settling into school, runny noses, fussy eating habits, etc. Although Carys’s cancer is not a secret, sometimes I just don’t feel like facing the reaction most people have when I tell them. Shock and disbelief is usually the first reaction. Then come pity, sadness and sometimes tears. I know that raising awareness of neuroblastoma is important, but I just can’t fly the flag all the time. So on the one hand, we go to music class, where Carys runs around with all the other toddlers, singing and dancing with Darminder, and no one knows she has cancer. Then on the other hand, we go to Challenge’s playgroup for kids with cancer. The kids in this group are very special. Some have lost their hair, and some have nasal-gastric tubes. They all have their own individual journeys to travel. But at heart, they also love to sing and dance and play, just like any other kid. Challenge does such and amazing job. They aim to improve the quality of life for kids living with cancer by organizing fun activities in a safe, warm, relaxed environment. We are so thankful for the support they give and the opportunities they provide for Carys (and us!) to have a laugh.
It is scan time again, and Carys had her MRI last Monday. We will see Lisa on Thursday for the results of this and the urine test.

Another MRI

It’s MRI time again, with Carys’s 4th post-op scan done a couple of weeks ago. We saw Lisa for the results this week, and it seems pretty much the same news as last time. The tumour is a little bit bigger than the previous scans 3 months ago, but nothing significant. So we went back 6 months to compare against her September scans, and the tumour is about 1cm longer since then. Not the news we were hoping for. Each time we scan, we are very hopeful for some shrinkage, but at the same time, try not to get our hopes up too much. Lisa was reassuring as usual, again emphasizing the factors we have in our favour, ie, that the tumour is not N-MYC amplified, has favourable histology and has no metastases. However, I could sense that her concern levels were raised. She wants to continue to keep a very close eye on Carys. Should the next scans in June show the same pattern, then surgery becomes a very real possibility. I am still trying to sort through my thoughts on this. The best possible path would be for spontaneous regression, and that’s what we continue to hope and pray for. I am loathe to put Carys through another major surgery, but if a second chance meant the tumour could be completely removed, then it would be worth it. If it comes to that, I know Carys will be my source of strength. She’s such a brave, strong, resilient little girl who takes everything in her stride and emerges even stronger than before. It’s me who falls apart to see her hooked up to numerous tubes and all bandaged up.
In other Carys news, we have seen her language and communication just explode in the past couple of months. Yesterday, she found some old baby photos of Chris and me. She came to get me, pulling on my hand saying “mummy, mummy, come quick, check this out!” She understands everything that’s going on, and we can have proper conversations with her. Every day is just a joy to spend with her, watching her blossom and thrive.
Meanwhile, big brother Tane has passed a milestone of his own. In February Tane started school and after a bit of a rough start, he seems to have found his place. He comes home with stories of sand castles and singing Aladdin songs. Oh and he’s also learning to read and do maths, so its not all play!

One year ago today

One year ago today, January 29th 2010, I first heard the word neuroblastoma. I've mentioned before that this past year has felt like the longest year of my life. But one thing that seems like it has just happened is diagnosis. The memories of that routine first year check up and the weeks that followed are still so vivid - along with all the associated emotions. Something fundamental and deep inside shifted that day, changing me forever. There are some days when I wish this was all just a bad dream, and then there are days when I have found strength I never knew I had. One of the helpful lessons I learned at the parenting course is that of acceptance. Accepting everything both good and bad that has happened, because that is my life story. Often I have tried to bury the painful memories and emotions, but to do that is to lose part of myself. Besides, it can never really be buried, because it did happen. And often, those nasty emotions have a habit of coming back stronger than ever if I try to push them down. So each day I look at Carys's beautiful face and it brings fresh hope that all will be good.

Carys turns two!!

Carys reached a special milestone on January 20th – she turned two! We had a low-key celebration with family at home. She had her heart set on a dinosaur cake (or in Carys speak – “daidoors” cake). We all had a lovely afternoon. Carys loved her cake and got lots of fun presents.



For me it was a mixed bag of emotions. Really happy that she’s doing so well, but at the same time, feeling drained and exhausted. I mentioned to Ian that I couldn’t believe Carys was turning 2. In some ways it felt like she should be turning 4, considering everything she (and us) has been through this past year. Her 1st birthday in HK seems like a lifetime ago. 2010 has definitely felt like the longest year of my life, but through it all, I think we have gained so much. We’ve found what really matters to us. Love, hope, family, living in the moment and taking the time to appreciate and cherish our children. They are both such funny, smart and caring people. I feel blessed to be their mother.
Carys has been going through a bit of a growth spurt these past few months. I think she is playing catch up. For much of last year her weight and height plateaued, but now, it seems she is growing noticeably from week to week. Her hair is also growing back, lovely and soft. It is also starting to curl at the back. So cute!

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/