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 :)