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 :)